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									                                   DRAFT April 2008

         Kentucky’s Family Guide
        Autism Spectrum Disorders

   This guide was written by families and professionals from across Kentucky.

The information included in this manual is a result of their answer to the question:

   When your child was first diagnosed, what information did you need most?

                                         DRAFT April 2008

                              Table of Contents
Chapter 1: What Is an Autism Spectrum Disorder?
A definition of ASD with a list of characteristics and common warning signs in young

Chapter 2: Diagnosis and Screening
      A history of the diagnosis of Autism Spectrum Disorders.
      Practice Parameters.
      Absolute Indicators.
      Venn Diagram (med and ed dx)
      How to start the referral process
      Letter to request a mulit eval
      An explanation of the difference between the medical diagnosis of ASD and the educational
       identification of autism

Chapter 3: Living with ASD
A review of common issues of daily life with practical tips for families

Chapter 4: Interventions
A review of therapies, program models, biomedical interventions, and individual

Chapter 5: Accessing Educational Services
A guide to obtaining appropriate educational services

Chapter 6: Social Service Programs
A list of Kentucky social service agencies and a review of the support they can provide

Chapter 7: Advocacy and Disability Awareness...
A guide to help families become advocates who will influence services and supports for
family members with ASD and influence public policy related to ASD

Chapter 8: Future Planning
A review of issues to consider as individuals with ASD grow into adulthood

Chapter 9: Introducing Your Child to Their Diagnosis

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How and When to Tell a Child about his or Her Diagnosis of and autism spectrum

References and Resources
A list of books, websites, and organizations that provide additional help and information

                                    CHAPTER 1
           What Is an Autism Spectrum Disorder?
The umbrella term pervasive developmental disorders (PDD) covers a group of five
developmental disabilities that have a neurological basis; that is, they are caused by a
brain disorder that affects how an individual thinks, communicates, and interacts with
others. PDD includes the following categories of diagnosis:
    Autism
    Asperger Syndrome (AS)
    Pervasive developmental disorder-not otherwise specified (PDD-NOS)
    Rett Syndrome
    Childhood disintegrative disorder

All five of these disorders share some characteristics.
     They are pervasive; that is, they affect all aspects of an individual‘s life.
     They are developmental; that is, they occur early in life and affect a child‘s

The following table lists the main defining characteristics of the five categories of
diagnoses under PDD.
                                 Major Characteristics
Autism                      - significant impairment in communication and socialization
                            - restricted interests
                            - stereotypic behaviors (e.g., rocking, spinning, finger or hand flapping)
                            - characteristics appear prior to age 3
                            - four times more common in boys than in girls
Asperger                    - less severe impairment in socialization and communication than autism
(AS)                        - typically language development at normal age (or earlier)
                            - typically normal self-help skills and normal (or above) IQ
PDD-NOS                     - marked impairment in communication and socialization
                            - restricted interests
                            - stereotypic behaviors
                            - full criteria not met for autism and/or onset after age 3

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Rett Syndrome              - initial development normal
                           - onset 6-18 mo.; may not be noticeable until 1-4 yrs
                           - progressive degeneration (begins 1-4 yrs)
                           - severe loss of communication and cognitive ability, as well as motor
                           - distinctive hand movements (wringing)
                           - almost exclusively affecting females
Childhood Disintegrative   - initial development normal (2-4 yrs); onset can be gradual or sudden
Disorder                   - progressive degeneration in all areas (e.g., motor, self-care, play)
                           - severe loss of communication and cognitive ability
                           - stereotypic behaviors
                           - little improvement later (results in severe/profound mental retardation)

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Autism spectrum disorders (ASD) is a commonly used term that refers to three of the
diagnoses under the PDD category: autism, Asperger Syndrome, and PDD-NOS. ASD
will be used throughout this manual to refer to these three disorders, which represent a
set of characteristics that appear in varying degrees. Individuals with ASD have
challenges in areas of communication, behavior, and socialization, although the extent
to which they are affected and the ways in which they are affected will differ from person
to person.
Due to the communication delay in children with autism, they are often diagnosed
before the age of 4. Because there is typically no delay in developing basic language
skills, individuals with Asperger Syndrome may not receive the diagnosis until much

Although the focus of this manual is on ASD, the information and strategies provided
will apply to individuals with Rett Syndrome and childhood disintegrative disorder.
Rett Syndrome (which predominantly affects females) and childhood disintegrative
disorder are the most rare PDDs. They are characterized by regression, a loss of
skills previously acquired, and significant cognitive and developmental problems.

Two Definitions of ASD
The medical and educational definitions of ASD serve different purposes.
The medical definition is required for a ―diagnosis‖ of autism and must be made by a
psychologist, psychiatrist, or a physician using criteria from the Diagnostic and
Statistical Manual of Mental Disorders (DSM-IV)
The educational definition was designed to identify children eligible for special education
services under the Individuals with Disabilities Education Act (IDEA) in 1991. This
identification is made by the school‘s evaluation team, taking into consideration whether
the child‘s symptoms adversely affect her educational performance (see Chapter 5). A
medical diagnosis is not required for an educational identification of ASD, nor does it
automatically guarantee identification.
Both definitions identify the difficulties experienced by individuals with ASD in the areas
of communication, socialization, and behavior.

ASD does not discriminate according to social, economic status, or race.
There is no proven cause of ASD.

“If you’ve met one child with autism, you’ve met one child with autism.” (Stephen
Shore, adult with ASD)

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Possible Signs of an ASD
ASD impacts three main areas of functioning: communication, socialization, and
behavior. However, behaviors and functioning can vary widely within and across
individuals even if they have the same diagnosis.
John is a 7-year-old boy who received a medical diagnosis of autism when he was 3
years old. He does not speak, but uses gestures to make his needs known. When he is
not understood, he shows frustration by squealing, throwing himself on the floor and
crying. In school, he receives full-day instruction in a classroom for children with autism.
He can complete simple puzzles and match blocks by color when asked and supervised
directly. John does not interact with his peers. He prefers playing alone and does not
play with toys in the way they were intended.
Gracie is an 8-year-old girl who was identified by her school evaluation team under the
category of autism. After her identification at school, her parents took her to a children’s
hospital for evaluation where she was diagnosed with Asperger Syndrome. Gracie is
very verbal and attends a regular second-grade classroom. While she can read words
at a sixth-grade level, her comprehension skills are at a first-grade level. Her teachers
report that Gracie has difficulty interacting with her classmates. She loves to talk about
spiders and bugs and has begun her own bug collection. She continually tries to
dominate conversations with her peers around the topic of bugs. Gracie does not realize
that her peers are not interested when they walk away while she is talking.
While both of these students have ASD, certainly, their characteristics in the areas of
communication, behavior, and socialization vary greatly.

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The following is a list of some common behaviors or characteristics you might observe
in your child.

      Difficulty in expressing needs (may use negative behavior instead of words)
      Laughs, cries, or shows distress for reasons not always apparent to others
      Delayed speech or no speech
      Has difficulty processing language (may not understand and/or may take longer
       to respond)
      Echolalic – immediate or delayed repetition of the words of another person
       (family member, peers, TV character, singer, etc.)
      Not responsive to verbal cues – acts as if deaf although tests prove hearing is in
       normal range
      Does not use joint attention – showing or sharing something with another person;
       this is typically demonstrated by using eye gaze and gestures, particularly
       pointing, for social interaction

      May prefer to be alone; appears aloof
      Difficulty interacting with other children
      May not want physical contact – cuddling, touching, hugging
      Little or no eye contact
      Difficulty initiating conversation or play with others
      Acts or speaks in socially inappropriate manner (such as speaking too loudly or
       for too long)
      Difficulty interpreting facial expressions and body language
      Difficulty understanding and interpreting emotions (of self and others)

      Difficulty transitioning from one activity or setting to another
      Tantrums or meltdowns
      Spins and/or lines up objects
      Inappropriate attachments to objects
      Frequently walks on tip toes (toe-walking)
      Stereotypic or self-stimulatory behaviors – repetitive movement of the body or
       other objects such as hand flapping, rocking, flicking fingers in front of face
      Restricted and persistent interests
      Insistence on sameness; resistance to change
      Self-injurious behaviors

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Other Areas
      Uneven gross-/fine-motor skills
      Sensory processing issues; unusual responses to sensory input
      Apparent over-sensitivity or under-sensitivity to pain
      Noticeable physical over-activity or under-activity
      Eats limited food choices and/or textures
      Minimal awareness to physical danger

Occurrence of Autism
The Centers for Disease Control and Prevention (CDC) estimate that between 1 in 500
and 1 in 150 children have an ASD. This wide range is the result of differences in the
findings of various research studies. Based on these estimates, approximately 24,000
children born in the United States every year will eventually receive a diagnosis of ASD.
There are currently approximately 500,000 individuals, aged 0-21, with ASD in this
country. ASD is more common than childhood cancer, Down syndrome, and juvenile

Genetics Research and Autism
As mentioned, there is currently no known cause of ASD. During the past decade,
scientists have made significant breakthroughs in understanding the genetics of autism.
Researchers are now focusing on specific chromosomal regions that may contain
autism-related genes. This has been accomplished by studying chromosomal
abnormalities in individuals with autism and by screening each chromosome for
evidence of genes associated with autism.
Current theory among autism genetics researchers supports the idea of ―complex‖
inheritance. This means that multiple genetic factors are likely to be involved and may
predispose an individual to develop autism. This theory also includes a role for
environmental factors. That is, in addition to having a certain combination of autism-
related genes, exposure to specific environmental factors may be necessary for autism
to develop in some individuals. For instance, if one version of a gene makes a person
susceptible to a particular chemical, exposure to that chemical could trigger autism to
develop. By focusing on the study of genetic factors and determining their underlying
mechanisms, researchers may be better able to pinpoint environmental factors that
contribute to autism.

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Much of current research is based on the Human Genome Project, a 13-year scientific
study to identify and analyze all the genes in human DNA. If you have questions about a
possible genetic link regarding autism in your family, it is recommended that you consult
a geneticist.

Autism Notes:
Autism Speaks:

Centers for Disease Control, Overview Autism Spectrum Disorder
Collaborative on Health and the Environment:
Cure Autism Now:

First Signs is dedicated to the early identification and intervention of children
with developmental delays and disorders.

Human Genome Project:
IAN, the Interactive Autism Network, is an innovative online project designed to
accelerate the pace of autism research by linking researchers and families.

U.S. Department of Health & Human Services, Overview Autism Spectrum Disorder

                                       DRAFT April 2008

                                  CHAPTER 2
                      Diagnosis and Screening
There is no blood test to determine if a child has an autism spectrum disorder. The
diagnosis is referred to as a descriptive diagnosis, meaning the diagnosis is based on
observation of the child‘s behavior. This chapter covers early signs that parents might
notice and screening and diagnostic instruments that professionals may use to make
the diagnosis of autism spectrum disorder.

Early Signs
The characteristic behaviors of ASD may or may not be obvious in infancy (12 to 18
months), but usually become more apparent during early childhood (18 months to 6
years). Children with high-functioning autism or Asperger Syndrome may not be
identified until much later because they often show no delay in the development of
fundamental language skills.

“Red Flags” of Autism
      Does not babble or coo by 12 months
      Does not gesture (point, wave, grasp) by 12 months
      Does not say single words by 16 months
      Does not say two-word phrases on his own by 24 months
      May lose language or social skills after having acquired them

“Red Flags” of Asperger Syndrome
      Clumsy
      Hyperactive
      Language processing speed (may be slow to understand and respond to
       requests or may not be able to say what she needs)
      Social skills (may make inappropriate comments, may talk to everyone about a
       topic of interest)
      Early reading and math skills (may read early but not comprehend what‘s read,
       or acquire math skills long before same-age peers)
Demonstrating more than one of these ―red flags‖ does not necessarily mean your child
has an ASD. However, it does indicate a need for further evaluation. Many of the
behaviors associated with autism are shared by other disorders, such as cognitive
disabilities (mental retardation), a behavioral disorder, or problems with hearing. Various
medical tests may be ordered to rule out or identify other possible explanations for
symptoms being exhibited. It is important to distinguish autism from other conditions,

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since an accurate diagnosis and early identification provide the basis for building an
appropriate and effective educational and treatment program.

Autistic Disorder (299.00 DSM-IV)

The central features of Autistic Disorder are the presence of markedly abnormal or
impaired development in social interaction and communication, and a markedly
restricted repertoire of activity and interest. The manifestations of this disorder vary
greatly depending on the developmental level and chronological age of the individual.
Autistic Disorder is sometimes referred to as Early Infantile Autism, Childhood Autism,
or Kanner's Autism (page 66).

A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one
each from (2) and (3):

   1. Qualitative impairment in social interaction, as manifested by at least two of the
          o Marked impairment in the use of multiple nonverbal behaviors such as eye
              to-eye gaze, facial expression, body postures, and gestures to regulate
              social interaction .
          o Failure to develop peer relationships appropriate to developmental level
          o A lack of spontaneous seeking to share enjoyment, interests, or
              achievements with other people (e.g., by a lack of showing, bringing, or
              pointing out objects of interest)
          o Lack of social or emotional reciprocity
   2. Qualitative impairments in communication as manifested by at least one of the
          o Delay in, or total lack of, the development of spoken language (not
              accompanied by an attempt to compensate through alternative modes of
              communication such as gestures or mime)
          o In individuals with adequate speech, marked impairment in the ability to
              initiate or sustain a conversation with others
          o Stereotyped and repetitive use of language or idiosyncratic language
          o Lack of varied, spontaneous make-believe play or social imitative play
              appropriate to developmental level
   3. Restricted repetitive and stereotyped patterns of behavior, interests, and
      activities, as manifested by at least one of the following:
          o Encompassing preoccupation with one or more stereotyped patterns of
              interest that is abnormal either in intensity or focus
          o Apparently inflexible adherence to specific, nonfunctional routines or
          o Stereotyped and repetitive motor mannerisms (e.g., hand or finger
              flapping or twisting, or complex whole-body movements)
          o Persistent preoccupation with parts of object

B. Delays or abnormal functioning in at least one of the following areas, with onset prior
to age 3 years:

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      Social interaction
      Language as used in social communication
      Symbolic or imaginative play

C. The disturbance is not better accounted for by Rett's Disorder or Childhood
Disintegrative Disorder.

Asperger’s Disorder (299.80 DSM-IV)

The essential features of Asperger's Disorder are severe and sustained impairment in
social interaction and the development of restricted, repetitive patterns of behavior,
interest, and activity. The disturbance must clinically show significant impairment in
social, occupational, and other important areas of functioning. In contrast to Autistic
Disorder, there are no clinically significant delays in language. In addition there are no
clinically significant delays in cognitive development or in the development of age-
appropriate self-help skills, adaptive behavior, and curiosity about the environment in

A. Qualitative impairment in social interaction, as manifested by at least two of the

      Marked impairment in the use of multiple nonverbal behaviors such as eye-to-
       eye gaze, facial expression, body postures, and gestures to regulate social
      Failure to develop peer relationships appropriate to developmental level
      A lack of spontaneous seeking to share enjoyment, interests, or achievements
       with other people (e.g., by a lack of showing, bringing, or pointing out objects of
       interest to other people)
      Lack of social or emotional reciprocity

B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as
manifested by at least one of the following:

      Encompassing preoccupation with one or more stereotyped and restricted
       patterns of interest that is abnormal either in intensity or focus
      Apparently inflexible adherence to specific, non-functional routines or rituals
      Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or
       twisting, or complex whole-body movements)
      Persistent preoccupation with parts of objects

C. The disturbance causes clinically significant impairment in social, occupational, or
other important areas of functioning.

D. There is no clinically significant general delay in language (e.g., single words used by
age 2 years, communicative phrases used by age 3 years)

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E. There is no clinically significant delay in cognitive development or in the development
of age-appropriate self-help skills, adaptive behavior (other than in social interaction),
and curiosity about the environment in childhood.

F. Criteria are not met for another specific Pervasive Developmental Disorder or

Rett’s Disorder (299.80 DSM-IV)

The essential feature of Rett's Disorder is the development of multiple specific deficits
following a period of normal functioning after birth. There is a loss of previously acquired
purposeful hand skills before subsequent development of characteristic hand movement
resembling hand wringing or hand washing. Interest in the social environment
diminishes in the first few years after the onset of the disorder. There is also significant
impairment in expressive and receptive language development with severe
psychomotor retardation. (Page 71)

A. All of the following:

      Apparently normal prenatal and prenatal development
      Apparently normal psychomotor development through the first 5 months after
      Normal head circumference at birth

B. Onset of all of the following after the period of normal development:

      Deceleration of head growth between ages 5 and 48 months
      Loss of previously acquired purposeful hand skills between ages 5 and 30
       months with the subsequent development of stereotyped hand movements (e.g.,
       hand-wringing or hand washing)
      Loss of social engagement early in the course (although often social interaction
       develops later)
      Appearance of poorly coordinated gait or trunk movements
      Severely impaired expressive and receptive language development with severe
       psychomotor retardation

Childhood Disintegrative Disorder (299.10 DSM-IV)

The central feature of Childhood Disintegrative Disorder is a marked regression in
multiple areas of functioning following a period of at least two years of apparently
normal development. After the first two years of life, the child has a clinically significant
loss of previously acquired skills in at least two of the following areas: expressive or
receptive language; social skills or adaptive behavior; bowel or bladder control; or play
or motor skills. Individuals with this disorder exhibit the social and communicative
deficits and behavioral features generally observed in Autistic Disorder, as there is

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qualitative impairment in social interaction, communication, and restrictive, repetitive
and stereotyped patterns of behavior, interests, and activities. (Page 73)

A. Apparently normal development for at least the first 2 years after birth as manifested
by the presence of age-appropriate verbal and nonverbal communication, social
relationships, play, and adaptive behavior.

B. Clinically significant loss of previously acquired skills (before age 10 years) in at least
two of the following areas:

      Expressive or receptive language
      Social skills or adaptive behavior
      Bowel or bladder control
      Play
      Motor skills

C. Abnormalities of functioning in at least two of the following areas:

      Qualitative impairment in social interaction (e.g., impairment in nonverbal
       behaviors, failure to develop peer relationships, lack of social or emotional
      Qualitative impairments in communication (e.g., delay or lack of spoken language,
       inability to initiate or sustain a conversation, stereotyped and repetitive use of
       language, lack of varied make-believe play)
      Restricted, repetitive, and stereotyped patterns of behavior, interests, and
       activities, including motor stereotypes and mannerisms

D. The disturbance is not better accounted for by another specific Pervasive
Developmental Disorder or by Schizophrenia.

PDD-NOS (299.80 DSM-IV)

The essential features of PDD-NOS are severe and pervasive impairment in the
development of reciprocal social interaction or verbal and nonverbal communication
skills; and stereotyped behaviors, interests, and activities. The criteria for Autistic
Disorder are not met because of late age onset; atypical and/or sub- threshold
symptomotology are present. (Page 77-78)

This category should be used when there is a severe and pervasive impairment in the
development of reciprocal social interaction or verbal and nonverbal communication
skills, or when stereotyped behavior, interests, and activities are present, but the criteria
are not met for a specific Pervasive Developmental Disorder, Schizophrenia,
Schizotypical Personality Disorder, or Avoidant Personality Disorder. For example, this
category includes "atypical autism"-- presentations that do not meet the criteria for
Autistic Disorder because of late age of onset, atypical symptomatology, or sub-
threshold symptomatology, or all of these.

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SOURCE: Definition of Pervasive Developmental Disorders from the Diagnostic and
Statistical Manual of Mental Disorders (2000) cited in Autism Society of America
( Retrieved March 4, 2007

Where to Turn for an Evaluation
If you‘re concerned about your child‘s development, talk to your child‘s pediatrician. He
or she may be able to refer you for further evaluation. If your pediatrician does not share
your concerns, consider seeking a second opinion from a professional who specializes
in ASD.
If your child is in preschool or elementary school, talk to his teacher. If your child is not
yet in school, you may still contact your local school district. The school district is
responsible for identifying all children with disabilities.
If your child is under 3 years of age, you may also contact Kentucky‘s early intervention
program called First Steps. First Steps is a statewide early intervention system which
provides services to children with developmental disabilities from birth to age 3 and their
families. First Steps is Kentucky's response to the federal Infant-Toddler Program (ITP)
established by Public Law 99-457 Part C. First Steps offers comprehensive services
through coordination with a variety of community agencies and service disciplines. First
Steps is administered by the Department for Public Health in the Cabinet for Health and
Family Services.
Why Provide Services?
Typically, children who participate in early intervention experience significant
improvement in development and learning. Children with developmental delays or
conditions likely to cause delays benefit greatly from First Step services during critical
developmental years.

Services and support also benefit families by reducing stress.
Early intervention services can decrease the need for costly special education programs
later in life by remediating problems early in the child's development.

Who Does First Steps Serve?

First Steps serves children from birth to age 3 and their families. Child eligibility for the
program is determined two ways:

By developmental delay - A child may be eligible for services if an evaluation shows that
a child is not developing typically in at least of five skill areas: cognition, communication,
physical, social and emotional or self-help.

Automatic entry - A child may be eligible if he or she receives a diagnosis of physical
or mental condition with high probability of resulting developmental delay, such as
Down Syndrome.

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How are First Steps services provided?
First Steps is available in all Kentucky counties. Services may be provided in the home,
at child development or other designated centers or in a clinical setting, depending on
the needs of the child and family and the availability of services in a given area.

Anyone can refer a child for First Steps services by calling 800-442-0087. Referrals
are directed to teams at the district Point of Entry offices that help children and families
access needed services. Services are available to any child and family who meet
developmental eligibility criteria, regardless of income. A family's participation in First
Steps services is always optional.
An evaluation can also be obtained at a children‘s hospital or clinic with a
developmental psychiatrist or psychologist, or other appropriate, licensed professional.
An ASD is diagnosed by observation of the child‘s communication, behavior, and
developmental levels. A brief observation in a single setting cannot present a true
picture of the child‘s abilities and behaviors. Parental (and other caregivers‘ and/or
teachers‘) input and the child‘s developmental history are important components in
making an accurate diagnosis. See Appendix A for the diagnostic criteria for pervasive
developmental disorder from the Diagnostic and Statistical Manual of Mental Disorders
Ideally, an evaluation is completed by a team of professionals from various
backgrounds, which may include a combination of any of the following:

       Developmental pediatrician – Treats health problems of children with
       developmental delays or handicaps. (A pediatric neurologist may be used in
       place of, or in addition to, a developmental pediatrician.)

       Child psychiatrist – A medical doctor who can prescribe medication and provide
       help in behavior, emotional adjustment, and social relationships.

       Clinical psychologist – Specializes in understanding the nature and impact of
       developmental disabilities, including ASD. May perform psychological and
       assessment tests, as well as help with behavior modification and social skills

       Occupational therapist – Focuses on practical, self-help skills that will aid in
       daily living, such as dressing and eating. May also work on sensory integration,
       coordination of movement, and fine-motor skills.

       Physical therapist – Helps to improve the use of bones, muscles, joints, and
       nerves to develop muscle strength, coordination, and motor skills.

       Speech/language pathologist – Involved in the improvement of communication
       skills, including speech and language.

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      Social worker – May provide counseling services or act as case manager
      helping to arrange services and treatments.

The evaluation process may include a variety of assessment tools, such as:
    Childhood Autism Rating Scale (CARS)
    The Modified Checklist for Autism in Toddlers (M-CHAT)
    The Social Communication Questionnaire (SCQ)
    The Autism Diagnostic Observation Schedule (ADOS)
    The Autism Diagnostic Interview – Revised (ADI-R)
    Gilliam Autism Rating Scale (GARS)
    Psychoeducational Profile, 3rd Edition (PEP-III)
    Parent Interviews for Autism (PIA)
    Asperger Syndrome Diagnostic Interview (ASDI)
    Asperger Syndrome Diagnostic Scale (ASDS)
    Gilliam Asperger‘s Disorder Scale (GADS)

According to the Individuals with Disabilities Education Act (IDEA), if a child has a
disability, the child is entitled to a free and appropriate public education (FAPE). FAPE
means an individualized educational program (IEP) that is designed to meet the child‘s
unique needs. FAPE includes special education and related services that are provided
for the child‘s educational benefit. In Kentucky, the medical diagnosis of autism is not
required for a child to be identified under the category of autism by the school team and
to receive special education services. For more information about educational
identification and accessing special education services, see Chapter 5.

Seek out other parents and discuss your child‘s situation with them. Learn about their
experiences. Often other parents are one of your best sources of information. In
addition, remember that you are allowed to invite any individual (e.g., extended family
member, friend, or neighbor) to participate in your child‘s IEP meeting. Bring people
who can help develop an IEP for your child.

What Will Happen During the Diagnostic
Assessment Process?
You will very likely have to wait some time, from several weeks to several months, to
obtain an appointment at an autism clinic or with a professional who performs autism
assessments. Each diagnostic process will differ based on the practices of the
professionals involved and the assessment(s) they are using.
When you make the appointment, be sure to ask the following:
   How long is the waiting period to obtain an assessment?
   What professionals will be involved?
   What assessments will be performed?

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      What records will be required from you?
      What will you need to do to prepare for the appointment?
      How many adults will be in the room with your child during the appointment?
      What will happen with your child during the appointment?
      Will you accompany your child during the assessment process?
      How long will the assessment process take?
      How long will it be until you will hear the results of the assessment?
      How long will it be until you have a written report?

Working with Professionals
As soon as your child is diagnosed with autism, and possibly before, you will most likely
begin working with a number of professionals.
The following are some of the professionals you may encounter:

      Medical professionals – pediatrician, developmental-behavioral pediatrician,

      Mental health professionals – psychiatrist, psychologist, neuropsychologist,
       social worker, caseworker

      School personnel – special education teacher, general education teacher, school
       psychologist, counselor, special education director, school principal

      Therapists – behavioral therapist, speech therapist, occupational therapist,
       physical therapist, play therapist, music therapist

      Service coordinators – early interventionist, MR/DD (mental
       retardation/developmental disabilities) service and support specialist
It can be intimidating to have to deal with so many different professionals. Professionals
often speak in their discipline‘s ―jargon,‖ which helps them speak shorthand to each
other. It can also serve to distance them from their patients/clients. This distance can
sometimes seem like arrogance and insensitivity, and can seem particularly painful the
first time a family is told their child has autism. Families remember this moment for the
rest of their lives.
It is not that the professionals are uncaring; after all, they chose careers helping children.
It is usually because they do not have the training (or the time) to help families process
their feelings about the information they are receiving. It is unrealistic to think families
will not have strong reactions to receiving a diagnosis of ASD for their child.

Suggestions for Working with Professionals

                                        DRAFT April 2008

First, allow yourself to have the feelings you experience. It is not necessarily a bad thing
to show emotion in front of professionals. It will help them develop empathy and a better
understanding of what you are going through.

      Communicate your level of stress by sharing actual examples of what you are
       going through. For example, let the IEP team know that your child is locking
       himself in the bathroom for three hours every night to avoid doing his homework
       or that your child (and you) are only sleeping three hours a night.

      Do not be intimidated by the expertise of professionals. They are the ―expert‖ in
       their field, but remember that you are the expert on your child. You have
       information that is just as valuable and you deserve to be treated with respect.
      If possible, both parents should attend meetings. Even if you are a single parent,
       it is in your child‘s best interest for parents to work together. Each parent may
       request a separate parent teacher conference, but schools are only required to
       conduct one set of Multi-Factored Evaluation (MFE) or IEP meetings. Both
       parents should have access to information about their child unless the court has
       prohibited one or the other parent from being involved.
      Everyone filters out some information, especially information that arouses intense
       feelings. Bring a friend or advocate to meetings to help you hear and remember
       what is being said.
      Make a list of questions when you think of them. Bring the list with you to
       appointments. Write down the answers as soon as you can or have a friend take
      Ask professionals to explain what they have said in plain language until you
       understand it.
      If there is not time for them to explain everything to your satisfaction, ask to
       schedule another meeting.
      Find out how you can communicate with a professional if you have questions
       later on.
      Clarify early on what (services) you can expect from the professional. For
       example, find out if the particular doctor provides diagnosis or assessments for
       the disability you suspect. Some pediatricians cannot or will not diagnose ASD.
      Communicate often.
      Keep communication open. Discuss problems as soon as they arise. Be honest.
       Give the professional a chance to address any problems.
      Be prepared. Professionals have limited time. Appointments will go more
       smoothly if you have done your homework and are ready with questions.
      Keep appointments or call if you can‘t keep them.
      Put everything in writing. Keep notes of every appointment and phone call. (See
       Parent Record-Keeping Worksheet in Appendix B.)

                                    DRAFT April 2008

   View professionals as resources in their fields. Continue to ask questions until
    you understand their position. Sometimes the professional does not have the
    most current information. Parents of children with autism are often in a position of
    knowing more than the professional.

   Remember that everyone has biases. Ask and understand what they are. For
    example, a surgeon‘s solution to a medical problem is usually to cut. A medical
    doctor‘s may be to use medication. Ask for data to support their
   Don‘t assume that professionals are only interested in what is best for your child.
    They may have competing interests. For example, a school system is only
    required to provide your child an ―appropriate program,‖ not necessarily the best
    program. They are trying to use their dollars most efficiently for many children.
    You want the best program for your child.
   Learn your rights.
   Be a good consumer. To advocate for a particular treatment method or service,
    do your homework and bring the research with you.
   Figure out what you really want for your child and state it as a goal. Instead of
    demanding a particular treatment or service, ask the professionals how they
    propose to help your child to achieve the goal. Then ask if what they propose is
    going to work and how they know that.
   Demand accountability. Professionals should have data and research to show
    what works.
   Ask for periodic reports so you can monitor your child‘s progress.
   Ask for a meeting to discuss if a treatment or therapy is not working.
   Remember it is okay, and you have the right, to disagree with professionals and,
    ultimately, to decide what is right for your child and family.
   Be respectful, even if you disagree. Explain your point of view in a calm,
    courteous way.
   If a relationship with a professional breaks down and is beyond repair or you just
    don‘t feel comfortable, you have the right to leave.
   Beware if you are continually jumping from one professional to another. Ask
    yourself if you have some unresolved feelings you need to deal address.
   Nurture and cultivate relationships with professionals, especially those who are
    working directly with your child. Your child will need all the advocates he can get.
   Consider bringing brownies to a meeting. Chocolate makes everyone feel better.
   Thank professionals in writing when they have helped you. Also write to their
    supervisors about how they have helped your child.

                                       DRAFT April 2008

You and your child will most likely be working with a host of professionals for his
entire life. You will get more help for your child if you can learn to build strong
relationships with those who are in a position to help him. This will start with you
believing that you are an equal partner in parent-professional collaborations and
continue as you nurture those relationships.

Dual Diagnosis or Comorbidity
People with ASD can have two or more separate diagnoses, including mental health,
medical conditions, or other developmental disabilities. This is referred to as dual
diagnosis, comorbidity, or co-existing conditions.

With Specific Developmental Disabilities
It can be difficult to identify and diagnose symptoms and traits of ASD as distinct from
other developmental disabilities that can cause speech and communication delays, low
muscle tone, sensitivities to/unawareness of light, sound, or different kinds of touch, or
demonstration of repetitive movements. It is important to understand the difference
between symptoms in children who only have other conditions and those who also have
ASD, because it could impact the treatment and services a child receives.
It is well documented that ASD can co-exist with many other conditions. Each year more
parents are getting accurate diagnoses of autism, ASD, PDD-NOS, etc., among their
children who also have:

      Fragile X syndrome
      Epilepsy and seizure disorders
      Visual impairment/blindness
      Hearing impairment/deafness
      Down Syndrome
      Tuberous sclerosis
      Cerebral palsy
      Angelman‘s Syndrome
      Eating disorders
      William‘s Syndrome
      Prader-Willi Syndrome
      Fetal alcohol syndrome or effect
It is not the intent to describe each condition in detail here. However, if you suspect
autistic behaviors or traits in your child who has another developmental disability,
please pursue an evaluation from a qualified professional. Having an accurate diagnosis
of ASD for a child with a co-existing disability can help make important decisions for
treatment and education. (For example, behaviors may be misinterpreted without a
proper diagnosis. Sometimes an adult may declare that a child is ―choosing‖ to ignore
verbal directions, when that child is, in fact, too overwhelmed by environmental noises
as a result of her ASD. In such a case, using pictures or written words instead of verbal

                                        DRAFT April 2008

directions is recommended, but such interventions are often not considered for a child
who has normal hearing and can say some words.)

Some disability support organizations, such as those for Fragile X, Down Syndrome,
and sensory impairments (visually impaired, hearing impaired) offer specific resources
and support for the dual diagnosis that includes ASD. These can include organizations
like the Upside of Downs, the National Association of the Deaf, National Federation for
the Blind, and Disability Solutions.

If anyone from whom you are seeking help says ―there is no such thing as a dual
diagnosis, you‘re just in denial about your child,‖ seek another opinion!

With Other Diagnoses – Common Disorders That
Can Occur with ASD
Just as a child with epilepsy can suffer from anxiety, depression, motor difficulties,
speech delays, and any other condition, an individual with ASD can suffer from other
symptoms or disorders. Though these conditions can and should be treated, their
treatment does not address the distinctive symptoms of ASD, such as impairment in
social interaction, restricted repetitive and stereotyped patterns of behavior or interests,
and so on, and thus the primary diagnosis of ASD should not be ignored.
Examples of co-occurring/dual diagnoses include the following:

Mental Health
      Bipolar disorder
      Generalized anxiety
      Obsessive compulsive disorder
      Oppositional-defiant disorder
      Depression
      Schizophrenia
      Mood disorder

      Seizure disorder (estimated at up to 25% of individuals with ASD)
      Tourette‘s Syndrome
      Sleep disorders
      Learning disabilities
      Attention deficit disorder (ADD or ADHD)
      Sensory integration disorder
      Executive functioning disorder

                                       DRAFT April 2008

      Cerebral palsy
      Muscular dystrophy
      Abnormal gait
      Poor coordination

      Diabetes
      Asthma
      Heart conditions
      Vision loss
      Hearing loss
      Allergies
      Gastrointestinal conditions
      Hypoglycemia
In addition to the specific diagnoses above, unusual responses to sensory stimuli, sleep
problems, and low muscle tone can occur in individuals with ASD.

While generalized anxiety or panic disorders are frequently co-occurring disorders in
their own right, anxiety is also an inevitable outcome for individuals on the spectrum
who try to fit into neurotypical society (Gutstein, 2004). Other symptoms of living with
ASD may also look like a separate disorder, although they are an expression of

                                       DRAFT April 2008

               Letter to Request a
            Multi-Factored Evaluation
Date you write your letter (Include month, day and year)
Your Name
Your Full Address
Full Name of Person to whom you are writing (the Principal or the Special Education
Person‘s Title (Principal, Special Education Director)
Name of School
Full Address of School
Dear (Use their title [Dr.; Mr.; Mrs.; Ms.] and last name):
I am the parent of (Your child’s name), who is in the ____ grade at (Name of school).
My child is not performing successfully in the general education classroom. (Briefly
state your concerns; examples: failing grades; problems with friends at school; it
takes a very long time for your child to complete homework; child comes home
very upset; etc.)
Under Kentucky Administrative Code, 3301-35-06, the general education teacher is
required to do interventions to assist in my child‘s success. Since my child is still not
performing successfully, I suspect he/she a disability. Under Child Find §300.125 in
IDEA ‗97, I am requesting a complete multifactored evaluation.
Please consider my signature on this letter as my permission to test my child. It is my
understanding that when a multi-factored evaluation is requested, the school district is
required to provide parents with their procedural safeguards. Please forward them to me
at the above address.
Thank you for your attention to my request. I may be reached at (Your daytime phone
number). I will expect to hear from you within 5 school days of receipt of this letter.
Sincerely yours,

Your Full Name

                                       DRAFT April 2008

Autism Spectrum Disorders:

Holtz, K., Ziegert, A., & Baker, C. (2004). Life journey through autism: An educator’s
       guide. Silver Springs, MD: Organization for Autism Research, Danya
       International. Also available at

Dual Diagnosis:
Down Syndrome:
Disability Solutions:
Riverbend Down Syndrome Parent Support Group:

Deafness and Autism:

Visual Impairment and Autism:
Texas School for the Blind:

Fragile X and ASD:
National Fragile X Foundation:

Autism and Epilepsy:
Autism Research Institute:
Epilepsy Foundation:

Down Syndrome and Autism:

Chromosomal abnormalities and
Disability Solutions:
Down syndrome & autistic spectrum disorder. Disability Solutions, 3(5 & 6).
International Rett Syndrome Association:
Riverbend Down Syndrome Parent Support Group:

                                       DRAFT April 2008

This Yahoo group (an electronic mailing list) provides more information on autism and
Down Syndrome: click on ―Join this Group‖

References and Resources
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental
      disorders (4th ed., text revision). Washington, DC: Author.
Cohen, W., Nadel, L., & Madnick, M. J. (2002). Down syndrome: Visions of the 21st
     century. New York: J. Wiley and Sons.
Capone, G. T. (1999). Down syndrome and autistic spectrum disorder: A look at what
     we know. Disability Solutions, 3(5 & 6).
Gabis, L., Pomeroy, J., & Andriola, M. R. (2005). Autism and epilepsy: Cause,
      consequence, comorbidity, or coincidence? Epilepsy & Behavior, 7, 652-656.
Ghaziuddin, M. (2006). Mental health aspects of autism and Asperger Syndrome.
      London: Jessica Kingsley Publishers.
Greaves, N., Prince, E., Evans, D. W., & Charman, T. (2006). Repetitive and ritualistic
      behaviour in children with Prader-Willis syndrome and children with autism.
      Journal of Intellectual Disability Research, 50, 92-100.
Gutstein, S. (2005). Going to the heart of autism – The RDI program 2: Anxiety & autism.
      Retrieved September 6, 2006, from
Gutstein, S. (2005). Going to the heart of autism – The RDI Program 2: “Is anxiety part
      of autism?” Retrieved September 6, 2006, from
Marko, K., Heikki, R., Eija, T., Shirkka-Liisa, L., & Irma, M. (2004). Associated medical
      disorders and disabilities in children with autistic disorder: A population-based
      study. Autism, 8, 49-60.
National Institute of Mental Health. (2005). Autism spectrum disorders. Retrieved
      September 6, 2006, from
Parent Resource Manual. (2006). Greater Cleveland Chapter – Autism Society of
      America. Retrieved April 25, 2006, from www.autism-
Pawletco, T. (2002, Fall). Autism and visual impairment. FOCAL Points, 1(2), 3-6.

                                     DRAFT April 2008

Peters, S. U., Beaudet, A. L., Madduri, N., & Bacino, C. A. (2004, December). Autism in
      Angelman Syndrome: Implications for autism research. Clinical Genetics, 66,
Vatter, G. (1998). Diagnosis of autism in children with Down Syndrome. Retrieved
       September 6, 2006, from
Wiznitzer, M. (2004). Autism and tuberous sclerosis. Journal of Child Neurology, 19,

                                               DRAFT April 2008

    Regional University Based Multi-Disciplinary Evaluation Services
Weisskopf Center for the Evaluation of Children (WCEC)
(502) 852-5331
University of Louisville, 571 South Floyd Street, Suite 100, Louisville, KY 40202
The WCEC provides comprehensive multi-disciplinary evaluations that are based on referral concerns.
Families are assisted in gaining a better understanding of the child's developmental needs. Available
professionals include: Developmental Pediatricians, Genetic Counselors, Psychologists, Speech
Pathologists, Occupational Therapists and Social Workers.

University of Louisville Bingham Child Guidance Center
(502) 852-6941
200 East Chestnut St, Louisville, KY 40202
Diagnostic evaluations of persons in whom "high functioning autism", Asperger's Disorder, or other social
communication handicap is suspected but not proven. Uses the Autism Diagnostic Interview and Autism
Diagnostic Observation Scales to solve "diagnostic dilemmas". Available professionals: Pediatric
Psychiatrist and Pediatric Nurse Practioner.

Eastern Kentucky University Psychology Clinic
(Developmental Disabilities Specialty Clinic)
(859) 622-2356
Eastern Kentucky University, Department of Psychology, Richmond, Ky. 40475
The Developmental Disabilities Specialty Clinic provides parent, family, child, and group intervention
services. Assessment services are available on a limited basis, including diagnostic consultation,
behavioral consultation, psychological evaluation, and a limited number of multidisciplinary evaluations.
Available professionals include: Psychologists, with consultation from Speech Pathologists, and
Occupational Therapists.

Kelly O'Leary Center for Pervasive Developmental Disorders
(800) 344-2462
Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, Ohio 45229-3039
The Kelly O'Leary Center at Cincinnati Children's Hospital Medical Center provides comprehensive,
multidisciplinary, family centered services for children with Autism Spectrum Disorder (ASD) and their
families. Available Professionals include: Developmental Pediatrician and Pediatric Nurse Practitioner.

Riley Child Development Center (RCDC)
(317) 274-8167
702 Barnhill Drive Rm. 5837, Indianapolis, IN 46202
The RCDC provides family centered interdisciplinary evaluations for children with autism spectrum
disorders and other developmental disabilities. Evaluations are planned around questions from the family,
primary physician, and school. Available disciplines typically include behavioral pediatrics, psychology,
social work, speech therapy, occupational therapy, physical therapy, audiology, nutrition, pediatric
dentistry, and nursing, and may include child psychiatry, child neurology, and genetics.

Vanderbilt Center for Child Development & Research
(615) 936-0264
Medical Center North 415, Vanderbilt University Medical Center, 2100, Pierce Avenue, Nashville, TN
Vanderbilt's CCDR provides clinical services, including diagnosis, assessment, and intervention planning
for children with disabilities and their families. They also provide early intervention services, Pre-service
training, and outreach training and they conduct research. All developmental disabilities are addressed,
with an emphasis on children birth to 5 years of age. Available professionals include: developmental
pediatricians, psychologists, and social workers, with access to occupational therapists, physical
therapists, speech-language pathologists, and special educators.

                                       DRAFT April 2008

                                   CHAPTER 3

               Living with ASD
You Are Not Alone
This chapter provides parents of children with ASD practical strategies and suggestions
for how to handle situations that may arise when living with a child/ren with ASD relating
to such topics as toileting, family outings, physician appointments, family issues,
finances, etc.
Upon receiving a diagnosis of ASD, parents experience a host of strong emotions. Few
forget the day when they realized that their child had a developmental disability and that
their journey of parenting might be quite different from what they had imagined. In an
article entitled You Are Not Alone, Patricia McGill Smith tells of a parent describing it as
if a ―black sack‖ was being pulled down over her head, and she could not hear, see or
think in normal ways.
Each person may react differently to the news, but there are some common reactions
that are shared by many. Parents grieve the loss of the ―typical‖ child that they expected
to have. You may experience some or all of the following:

      Shock or denial. You may think, ―How can this be happening to me?‖ or want to
       make the disability go away.
      Anger. You may be angry at yourself or others for ―causing‖ ASD, you may be
       angry at God, at medical personnel, at your spouse, or even your child.
      Guilt. You many think there was something you could have done that would
       have prevented the diagnosis.
      Rejection. Some parents even report having a ―death wish‖ for their child.
      Confusion. Confusion is very common for families trying to sort through all the
       information about ASD and make choices about treatment.
      Fear. You may fear the worst or have memories of other children and/or adults
       with disabilities and wonder if your child will have a similar life.
      Isolation. Because of the unique communication, social and behavioral issues
       presented by children with ASD, you may feel very alone. Eating out, doing
       things as a family, or finding time alone with your spouse or spending time with
       your friends becomes a challenge.
      Envy. Seeing other parents with their typical children may make you feel envious
       and resentful.
      Relief. Some parents report they are glad to know that their child‘s behavior is
       not caused by poor parenting.

                                       DRAFT April 2008

As extreme as some of these feelings may seem, they are normal. One of the ways you
can take care of yourself is to realize that you, your spouse, or family members are not
bad people for feeling angry or having other negative feelings – you are human. These
are common feelings parents and families have reported as they go through the process
of adjusting to a child‘s diagnosis. You may find yourself feeling waves of grief
throughout the lifespan at different times. Events like birthdays, school transitions,
holidays, and other big events can trigger feelings of loss. If you get stuck working
through the stress and grief of having a child with ASD, seek help and support.

Signs That Indicate That You Need Help
             Trouble sleeping or sleeping all the time
             Feeling tired all the time
             Loss of appetite
             Headaches, or other frequent pains
             Loss of interest in sex
             Thoughts of hurting yourself or others
                See a health care provider and/or counselor for help.

You Can Do This!
Although at times it may seem almost impossible to handle the challenges that you are
facing, you can do this! Remember, your child is not defined by her ASD. You will be
able to parent your child successfully if you try to:

Appreciate the uniqueness of your child. Don‘t compare her to others.

Focus on your child‘s strengths. All children have things they do well.

Show unconditional love. If you find yourself taking anger out on your child or someone
else, get help.

Get informed. Learn about your child‘s educational and other rights as well as programs
that can help you and your family. Ask lots of questions!

Don‘t be overprotective. Let your child do things for herself as much as possible.

Have fun!! Find things you both enjoy and do them a lot.

The Autism Speaks 100 Day Tool Kit is created specifically for newly diagnosed
families, to make the best possible use of the 100 days following the diagnosis of
autism. The kit contains information and advice collected from trusted and respected
experts on autism as well as from parents of children with autism. There is a week by
week plan for the next 100 days, as well organizational suggestions and forms that
parents/caregivers can use to help with the paperwork and phone calls, as they begin to
find services for their child.

                                   DRAFT April 2008

                                       DRAFT April 2008

Taking Care of Yourself and Your Family
The demands and challenges of raising a child with ASD can be overwhelming.
According to the Autism Society of America, research indicates that parents of children
with ASD experience greater stress than parents of children with mental retardation and
Down Syndrome. The best way to help your child is to deal with your own stress.
   Having support can make a big difference, but you must take the initiative. You
   cannot always expect others to come to you.

Share your feelings with your spouse/ partner if you have one. Reaching out helps
both of you.
Enlist the help of friends and relatives. While they can help, be aware they may also
be experiencing some of the same feelings of loss and confusion. Talk openly with them
about your child and how they can help.
Involve your faith community. Some parents find comfort in their spirituality. See Is-
sues of Faith later in this chapter.
See a counselor for individual or marital counseling if needed. Check with your
doctor, mental health agency, or leader of your faith community for possible counselors.
Ask if they have experience with special needs families.
Find other parents who understand the challenges of raising a child with ASD.
The importance of parent-to-parent support cannot be overstated. Other parents of
children with disabilities can identify with your feelings of loss and frustration, help you
find programs and funding for therapies, laugh with you, and possibly even cry with you.
Many enjoy the company of another parent because there is no judgment, but a true
understanding of how hard parenting can be.
Talking with another parent is a great place to find practical everyday help for issues
that may be hard for you right now. You can find support informally by meeting for a cup
of coffee, joining an online support group, or locating local organized support groups. In
Kentucky you can call (502) 852-4631 to find out about parent support groups near you.
Parents report that they often learn as much from talking with other parents as they do
from professionals and books. Parents before you have learned to negotiate education,
funding and other service systems, and they can give you many helpful pointers on how
to access services.

Online Support
In this age of technology, many people turn to their computers before going to the
library or bookstore when researching information about ASD. The Internet can also be
a place of refuge for parents who are hesitant to talk about their personal lives in the
more public forum of a support group meeting. There are electronic (online) groups that
are organized around the topic of ASD so that individuals can exchange information
about topics of common interest. They can also serve an important support function for

                                       DRAFT April 2008

people who are strapped for time to attend meetings in person or are geographically
While it is important to have an understanding network of family and friends to count on
when the going gets rough, your existing circle of friends may not be able to understand
your changing needs and their support may not be adequate. An electronic mailing
group can be like having an autism help hotline available 24/7.
For example, on a recent electronic mailing group for parents of children with ASD, a
parent reported that his child began having sleep problems again after months of
sleeping through the night. The list member soon received responses from several
parents who had similar experiences and who suggested strategies they used to deal
with the problem. Parents may use the list to locate competent caregivers for their
These Internet communities are commonly referred to as listservs (the copyrighted
name for Electronic mailing list or email list). They are also referred to as ―Internet
groups‖ or just plain “lists.” Both Yahoo and Google (two major Internet browsers)
have ―Groups‖ under their listings. Yahoo and Google both have thousands of these
listservs grouped by categories.

Learn more about up-coming events, trainings, workshops, support groups, disability
related information and other useful information for families and professionals in the
autism community in Kentucky. To join contact the KATC at

Blogs‖ (short for web logs) are also increasing in popularity. They are a kind of online
journal created by an individual, but made public on the Internet so anyone interested
can read about their experiences. Like the listservs, they can link people with common
Chat rooms are roundtable discussions in real time where several people who are
online at the same time can send messages to one another and discuss particular
Electronic mailing groups or listservs are the safest to participate in. Particularly
helpful are those that are moderated, meaning that you must ask permission to join and
someone reviews the postings to ensure that they are appropriate. There can be
varying degrees of restrictions for membership, depending on how the groups were
Listservs will have archives of old postings. In order to search the archives of a group,
or list, you must be a member. In other words, you cannot just open up a website and
begin to participate. This extra level of security means that members can reduce the risk
of ―spamming.‖ Further, moderated groups have the ability to ―unsubscribe‖ people who
do not abide by the rules set up for the group.

                                        DRAFT April 2008

Time for Yourself
Most parents of children with an ASD feel they do not have the time to do anything for
themselves, but even a few minutes a day can help relieve stress. When we are
stressed, our brains are working overtime and our judgment can be impaired.
Sometimes we think we cannot stop out of guilt because we might not be helping our
family enough. We continue to work harder and harder while getting more frustrated and
possibly making mistakes.
Simple things like taking a short walk, listening to music, or cooking a favorite meal can
help you to feel better. Take time to think about your unique abilities and interests that
are separate from your role as a parent. It is O.K. to take a break from your child now
and then. Taking a break is good both for you and for your child. In fairness to all family
members, it is O.K. for your family to occasionally engage in activities without your child
with ASD. Take an extended break if you are able. If it seems impossible to do, start
small and gradually extend the time. You may have to learn to relax and let go. Here are
some tips that may help.

      Set an alarm or timer to remind yourself to take breaks throughout the day.

      Schedule extended breaks (a few hours a week or whatever you can manage) on
       your calendar instead of waiting until you think you can fit it in. If it is not
       scheduled, it usually doesn‘t happen.

      Other ways to consider to reduce stress include:
      Prayer/meditation

      Exercise/walking/stretching

      Deep breathing/relaxation exercises
      Keeping a journal

      Setting realistic expectations, but have a ―to-do‖ list to guide your activities

      Advocating for others; that is, helping another parent take an action or say what
       they want or get what they need.

Time for You and Your Spouse
Parenting a typical child can place stress on a marriage. Parenting a child with special
needs can be especially challenging. Couples need to have open discussions about
their feelings, but they also need opportunities to stay connected and talk about things
other than the children. Listening to and respecting your spouse‘s feelings can go a long
way to remaining close. Recognize that your spouse may handle grief differently than
you and allow your spouse to do it in his or her way.

                                       DRAFT April 2008

Single Parenting
Many parents face parenting without a spouse or significant other because of death,
divorce, or separation. We know that families with children with ASD have higher rates
of divorce, some report it as high as 75% to 80%. Divorce and death/loss are two of the
most stressful events for any family.
      When experiencing and living after the divorce, remember to plan for the
      Incorporate a visitation schedule into your child‘s visual or written schedule.
      Help children identify their emotions, even if it makes you or them uncomfortable.
       This is very important because negative behaviors may occur when children do
       not acknowledge their emotions.
      Give the child time to adjust to the change in routine.
      Use pictures/video of the different homes the child will be going to help explain
       the change in living arrangements.
      Try to keep the rules and rewards the same in managing difficult behavior.
      If possible, keep the noncustodial parent involved in child‘s development and
Single parenting may require you to ask for help more often than if you had a live-in
spouse or partner. This can be hard, but it is an important part of keeping yourself
healthy. Being a single parent, you may find yourself concerned with how you are going
to handle all the expenses of raising a child with ASD alone. You may also question
how you will be able to date or have a serious relationship with someone in the future,
knowing that you have a child with ASD. These are legitimate concerns. Remember,
these questions have gone through the minds of many other parents of children with
ASD. Other parents can be your best resource. Seek the support of those who have
experienced similar circumstances.

                                        DRAFT April 2008

Dan Coulter website
This is a father of two children with significant disabilities. Dan puts into words the
questions that many parents have and he gives some good advice.
Autism Society of America: Living with Autism website
This area of the website address daily family and parenting issues

NICHCY website
This federally funded program is a clearinghouse that provides a wealth of information
for parents of children with disabilities. This article focuses on parenting a child with a

    Siblings will be in the life of a person with ASD longer than anyone else.
The sibling relationship can have a large impact on the future of both your typical
children and your child with ASD. In other words, the way a typical child reacts to having
a sibling with ASD will affect the relationship that they have in the future. Again, it is
helpful to hear others‘ experiences. Many see having a brother or sister with special
needs as something positive that teaches them to accept others as they are. Siblings
can be the strongest protectors and loudest cheerleaders. In contrast, some siblings
feel jealous, neglected, or rejected because of the time and energy they see being
invested in the child with special needs. Typical siblings may worry about the future of
their brother or sister and their future role in care giving. They may be concerned about
how peers will react to their sibling with ASD and they may feel embarrassed. Some
typical siblings become targets of aggressive behaviors. These can be difficult issues
for parents.

                                       DRAFT April 2008

What do siblings need?

Information/communication – Siblings need regular discussions that are suitable for
their level of understanding about ASD. They need to be able to ask questions and
share their concerns. A young child may be concerned about ―catching‖ autism while
older siblings may be more concerned about what is expected of them in future care
giving. Try to make no subject ―out of bounds‖ to discuss.

Support – Just like parents, siblings need support. They need a place to talk to other
siblings about what it is like to have a brother or sister with ASD. Look for support
groups, sibshops, or other programs for siblings in your area. There are also online
support groups and listservs for siblings. (See the resources at end of the section.) If
there is no formal group in your area, arrange some informal play dates with brothers
and sisters of children with ASD that you know to give them the opportunity to interact
with each other.

Respect and consideration for their uniqueness – Celebrate even ―expected‖ mile-
stones for siblings. Allow them to have choices about how involved they want to be with
their sister or brother.

Safety – Siblings need to have a safe place for themselves and their belongings. Help
them to learn to communicate with you and their brother or sister with ASD when they
need space and time away. Be sure they know it is O.K. to ask for help.

Individual time and attention – Plan to spend regularly scheduled time alone with your
typical children. They need to count on a specific time that is devoted just to them.

Acceptance of typical sibling behavior – Sibling conflict is normal in most households.
Expect conflict and know this may help prepare the child with ASD for real-life situations.
Don‘t always expect the typical sibling to compromise or ―know better.‖

Opportunities to have a “normal” life – Give yourself permission to take a trip without
the child with ASD. Try to find respite resources so siblings can fully experience things
they choose. Both siblings and the child with ASD need chores and responsibilities
equal to their abilities. Don‘t assume that because a child has ASD she does not have
the ability to help around the house.

                                        DRAFT April 2008

Strategies for dealing with their sibling, peers, and their own emotions – Siblings
need to know how to deal with the unusual behaviors that are often exhibited by their
sibling/s with ASD. They also need some guidance in how to deal with questions from
peers and the general public. Siblings need to know that it is O.K. to feel embarrassed
about their sibling or to worry about them. If you think your typical child could use the
assistance of a professional counselor, that is O.K. too.
Positive parents – Probably the greatest impact will be the attitude of the parent(s).
Being positive will help them meet the challenge. How we choose to deal with our own
emotions and attitudes will impact their experience.

My brother has autism. His diagnosis has changed our family, from the constant
presence of a therapist and dietary changes that encompass the whole family, to
accommodating his sensory issues in all that we do. However, to dwell on these
aspects implies that autism defines our family, when this is not the case. We simply do
what must be done for him; all that this entails has become our norm. In the process of
living with and loving him, we have learned to cherish his true essence, rather than
focusing on the superficial actions or differences of autism.

My brother has autism. Most of the time, I hardly think about it. But sometimes, when
he and I are sitting together on the couch, I am overwhelmed with a painful and
instinctive consciousness of an intangible barrier between us. I can sense the person
inside my brother, shielded by autism. During these moments, I mourn for the
relationship that has been denied us. Despite the pain, I am able to realize how blessed
I am to know and love the sweet, gentle part of him that escapes the autism barrier.

As my brother and I enter our teenage years, our future lives, as adults, loom closer
with each passing day, as is evidenced from his changing voice and newly acquired
height. The unknown aspect of his future is frightening. Right now my parents are my
brother‘s primary caregivers, but how will this role change in the future? I wonder if I will
be capable of handling the responsibility of this position when the time comes. The
future, in addition to posing challenges for me, contains incredibly difficult hurdles for
He, including finding friends, activities, a job, and an independent life. While my family is
doing everything we can to prepare him for his adult life, the uncertainty of what lies
ahead for him is achingly real.

 Above all, I wish that he will always be surrounded by love. If the world could see what
we do when looking at him, instead of being blinded by his autism, my wish would be an
instant reality. But this is not a perfect world. Therefore, my family and I will continue to
fight for him, attempting to ensure a fulfilling and meaningful life for him.

Natalie Pope

                                        DRAFT April 2008

Sibling Resources
Feiges, L. S., & Weiss, M. J. (2004). Sibling stories: Reflections on life with a brother or
      sister on the autism spectrum. Shawnee Mission, KS: Autism Asperger
      Publishing Company.
Harris, S., & Glasberg, B. A. (1994). Siblings of children with autism: A guide for families.
       Bethesda, MD: Woodbine House.
The Sibling Support Project website
This project is a national effort dedicated to the life-long concerns of brothers and sis-
ters of people who have special health, developmental, or mental health concerns.

Grandparents and Other Family Members
―Why do you have to travel so often to see your grandchildren?‖ Was so often asked by
my relatives and friends. At the time, I had one grandson in Atlanta and one
granddaughter in California. My very waring response was, ―You‘ll never understand
until you have a grandchild of your own.‖

As time passed, my daughter gave birth to twin boys and moved to Kentucky with her
family. A few months later, Eric, one of the twins was diagnosed with autism. As a
result, Grandpa and I visited every two to three months offering as much help and
support we possibly could during those short stays. This continued for a few years.
One day Grandpa suggested we moved to Kentucky and be full-time grandparents. My
first reaction was that my husband was not serious about the move. I was so wrong.

―Why or how could you give up 42 years in the same home, leaving your family and
friends, and move to KY?‖ My response was a little different this time. ―You could
never understand unless you had a grandchild with autism.‖

Our new journey began in October 2007 with our move to Louisville. Entering
blindfolded and unaware of what autism really is, how can we possibly help?

I can only speak for myself. Looking at my three grandsons, I burst with love. With Eric
there is an added feeling of heartache knowing he does not communicate much or have
fun with his brothers like they do with each other. Mostly, I carry this feeling of guilt
because I want to make everything okay. I want Eric to say, ―Grandma, it‘s okay.‖ and
―Grandma I love you.‖

Will the day ever come when he can leave his own little world to enter ours or allow us
to enter his? Meantime, I will continue to love him, and let him know how special he is.
I will do all I can to help Eric and his family.

                                        DRAFT April 2008

Hopefully this will lessen the feeling of guilt. Why can‘t I make him better? After all, I
am Eric‘s GRANDma.

Jean Mannarelli

Like parents, grandparents grieve the loss of the ―typical‖ grandchild and are concerned
for their own children in the process. They, too, will need information, open
communication, and recognition that they are grieving. Many well-meaning family
members offer advice on behavioral issues. However, parents can become frustrated
and perceive a lack of support when grandparents do not agree with the parents on how
to handle difficult situations with their child with ASD. Open communication and
information can help enhance your support and allow family members the opportunity to
learn about your child.

There are books and organizations that address the needs of grandparents of children
with ASD. The Autism Society of America is one such organization. Listed below are
examples of books for grandparents of children with ASD.

Martin, E. P. (2004). Dear Charlie, A grandfather’s love letter to his grandson with
       autism. Arlington, TX: Future Horizons.
Thomas, K. R. (2006). Grandparenting a child with autism: A search for help and hope.
     Louisville, KY: Harmony House Publishers.

Autism Society of America website: Living with autism:
Parenting a child with special needs. (2003). NICHCY News Digest, 20 (3rd ed.)
      Available from the NICHCY website:

Family/Social Gatherings
Holidays, family reunions, birthdays, visiting relatives, and other special celebrations
can be especially stressful for a child with ASD. These activities may bring about
unexpected events as well as excessive amounts of sensory input. Such situations can
contribute to anxiety, and the child can soon feel overwhelmed.
Writing a letter before family visits can help make the event more enjoyable. Share the
things that will help your child feel comfortable, activities that he enjoys, foods he likes,
and how family members can expect your child to respond when situations may be too
much for him. Bring special toys, videos, games, or other comfort items. Be sure to plan

                                       DRAFT April 2008

frequent breaks when traveling. Finding a place where your child can take a break from
the crowd will help the visit be more enjoyable for everyone.
Holidays bring lots of change and increased social demands. Consider keeping the
decorations simple and safe. Make sure your decorations will not choke or harm your
child if she were to touch them or place them in her mouth. Send a list of preferred gifts
to family members to help everyone feel more fulfilled, that way your child will receive a
gift he prefers and the family member may get to witness him enjoying the gift. Prepare
your family for the possibility that your child may not want to participate in opening gifts
or consider setting a limit on the number of gifts he is expected to open. At home, you
may allow your child to open a gift a day so he is not overwhelmed on the actual holiday.
Consider using a social narrative to describe what will happen at holidays or birthdays
or other special events.
If you plan to attend a family reunion or other large gathering, showing your child
pictures of the unfamiliar people and places ahead of time may help ease anxiety.
Preparing both your child and your family through open communication is always helpful.
For other ideas see the book Finding Our Way by Kristi Sakai (

Day-to-Day Issues in Living with ASD
This section is a broad overview with suggestions for navigating the many situations
and decisions parents face as they negotiate their daily lives and support their child with
ASD. It covers friendships, finances, approaching therapy and education decisions,
creating a workable daily home schedule, dealing with doctor appointments, and even
discusses issues of faith.

Balancing Life on the Spectrum

It is easy to feel overwhelmed by all the decisions that you will be making while living
with ASD. It can be challenging to find time and ways to help everyone feel valued and
get their needs met, not to mention having your own needs met, as discussed earlier. If
everything in your family revolves around the child with ASD, other family members can
become resentful. Do you define your family as a special needs family or a family with a
special needs child? Finding a balance in your decision making and making choices that
fit your family will help ease the stress of day-to-day living.

                                        DRAFT April 2008

You may be wondering …

      Should I/we have another child, knowing there is an increased risk for having
       another with ASD?

      Should we move or sell possessions to get better services?

      How many assessments and therapies are necessary for my child?
Evaluate your decisions carefully and try to keep some balance in your everyday life.
Consider how decisions will impact your whole family and not just the child with an ASD.
Unfortunately, there are people who take advantage of families that are desperate to
help their child. Research carefully the services and/or treatments that are being offered
to you and your child with ASD and select them according to what best meets the needs
of your child and family. While searching for answers you will find opinions that may
differ even among the ―experts.‖ Take one day at a time and try to keep your routines as
normal as possible. It will help provide some consistency when things are hectic.

Your Changing Circle of Friends
One of the most difficult and surprising aspects of learning that your child has a
diagnosis of ASD is discovering that your circle of friends will change. Your friends and
close family members can be a true source of support and encouragement.
Unfortunately, when we need our friends and family the most, sometimes they are not
as supportive as we had hoped. As a result, you may find yourself confiding in total
strangers at a support group meeting or seeking comfort in the listening ear of a
coworker when you used to share everything with your sister, or your best friend.
Individuals are just that – individuals. The people who have been closest to you may
react to your child‘s diagnosis in a variety of ways, just as parents react in a variety of
ways. Some may be in denial while others may express a genuine sadness. Keep in
mind, though, that your closest friends and family members love and care about you
and your child. Their concern is for your well-being as much as it is for your child‘s.
When an adult friend or relative has experienced a life-changing event, many people do
not know how to react. Some friends are uncomfortable in the presence of people with
mental retardation or developmental disabilities. Others withdraw in fear that they would
say or do the wrong thing. This may be true if your child has challenging behavior or has
yet to attain functional communication. In an effort to be supportive, people may say all
the wrong things:

                                        DRAFT April 2008

    “My cousin’s son didn’t talk until he was 4, and now he’s a sophomore in college.”
   “Einstein was autistic, you know.”
   “Well at least he can walk.”
   “I saw a lady on TV whose son’s autism was cured with (fill in the blank).”
Others may be blunt:
   “That kid just needs a spanking now and then!”
   “Get over it!”
You will no doubt hear statements that will hurt your feelings or cause anger. It is
difficult enough to ignore a stranger, but we expect much more from those close to us.
Parents are vulnerable, especially when new to the diagnosis. If you are having difficulty
with feelings of depression or anger, consult a professional counselor who has
experience in working with parents of children with chronic disorders. A chaplain at the
nearest children‘s hospital may be able to provide appropriate resources or referrals.
Consider also that, although we have crossed into the 21st century, many adults today
did not grow up with much exposure to people with cognitive disabilities. And certainly,
most did not attend school with children with disabilities. So the reactions of your friends
and family members, especially the older ones, may simply be due to a lack of
The best way to react to these situations is to share information about ASD, and to
encourage friends and relatives to spend time with your child. Invite them to your
support group meetings or ask them to accompany you on a doctor visit. Explain to
them that you not only need their moral support, but you also could use a little respite
from time to time. The better they know your child, the more willing they may be to help.
Make a mental note every time someone offers to help, however generic the offer may
be. If you are experiencing a particularly difficult week, ask someone to run errands for
you, help with laundry, or pick up your children after school. If you are affiliated with a
church or a social club, fellow members may be willing to assist in some way on a
regular basis. Be comfortable in asking for help when there is a need. Many people are
happy to help. You will be supported, and your child will be exposed to a variety of
people and personalities in the process.
Your daily routines have probably changed since your child‘s diagnosis. Much time is
now spent with therapists, teachers, medical specialists, and other providers who
understand and accept your child. It may be easy to consider these new adults in your
life as your new friends. You may look forward to the brief encounters with
professionals who truly understand. Certainly, they may be friendly people, and they
can be a tremendous source of support to you; however, your real friends should not be
forgotten. Include them as much as possible in your new routines. Think outside the box
when planning visits with your friends. While your life may have changed, your friends‘
lives probably have not, so try not to let autism be the topic of every conversation.

                            DRAFT April 2008

               10 Things I Want My Friends to Know

1.    My life has changed, but I still want you to be my friend. We
      may need to be creative in thinking of new ways to spend time
2.    Listen. I want you to know about my child and about how his life
      is affected by ASD. I may have days when I just need to ―vent.‖
3.    Keep what I say confidential. As my friend, you may
      occasionally be my sounding board. Please respect the privacy
      of my family by not repeating what I say.
4.    Don‘t judge my child or me. Ask questions if you have concerns
      about the choices we have made for our child.
5.    Respect my feelings. My feelings may run the gamut from
      desperation to hopefulness and will change largely based on
      what kind of day my child is having.
6.    Encourage and support me. I need to hear positive feedback.
      Be my guest at a support group meeting, or offer to keep my
      child while I go.
7.    I really am happy for the milestones that your children are
      reaching. Don‘t exclude me from your celebrations; however,
      please understand if I am not always able to attend.
8.    Ask questions. I‘ll be happy that you are interested.
9.    Communicate with me. Please let me know if you can or cannot
      help with my child. It is OK to tell me if you are uncomfortable. I
      need to know how you feel.
10.   Be my advocate. Other friends or acquaintances may not
      understand or may be judgmental. You may be able to keep
      them abreast of my child‘s progress and our family‘s needs.

                                       DRAFT April 2008

Parents, grandparents, and siblings largely report that support groups have been
very helpful. However, others are uncomfortable with the candid expressions of
feelings and vulnerability displayed at support group meetings. Attending casual
gatherings or informal activities sponsored by autism groups may be an easier way
for some parents to meet new friends. Some areas in Kentucky have successfully
started support groups and other activities just for dads, grandparents, or siblings of
autistic kids. These provide opportunities for the attendees to meet other people who
share similar experiences.

Having a child with ASD can be a drain on a family‘s resources due to the cost of
expensive evaluations, home programs, and therapies. One family member may have
to give up his or her job because of the care-giving demands of raising a child with
autism, and the financial pressures may increase as a result. Because of the
challenging behaviors often present in children with ASD, many parents find the need to
seek out jobs with flexible hours or work different shifts so one parent is at home all the
time. Some have developed their own home-based businesses, and still others rely on
some form of government assistance to manage.
Networking with other parents, getting involved with local support groups or chapters of
ASA will keep you informed of the latest sources of funding and other supports that
could help. It may be difficult for you to ask for help, but there may be untapped
resources out there.

           Things to Consider Related to Finances and Funding Services

      If insurance denies a claim, appeal it.
      Parents in the same insurance company can ban together. One company
       planned to drop coverage for speech therapy, but after several parents called
       and wrote letters, the benefit was reinstated.
      Ask providers if they have fees based on income.
      Use college students to help. They are more affordable and often are able to
       earn course credit.
      Use volunteers from your community if you are doing a home-based program.
      Ask that money be given for services to help your child instead of extravagant
       toys and gifts.
      Consider hosting your own fundraisers.
      Explore possible tax deductions with your tax advisor.

                                       DRAFT April 2008

Daily Functioning at Home
In addition to dealing with friends and finances, parents often find that they must create
a daily home schedule that supports the child with ASD and the family as well. Families
engage in daily routines within the household that are executed with little thought or
planning, and certain activities continue to occur without question over and over again.
They are a part of living, a part of being in the household. These includes activities such
       Bedtime                     Going to the grocery store/errands
       Bath time                   Household chores
       Meals                       Getting ready for school
       Play time                   Having other children visit the home
       Nap or quiet time           Toileting/self-care
Although a variety of strategies could be suggested here for each activity to help a child
with ASD cope more easily, it is important to focus on the underlying characteristics and
environmental factors of each child and each home situation as you think about these
routines. As you encourage your child with ASD to participate in these routines and gain
adaptive skills, consider the following.
   1. Understand that your child’s age may not equal his developmental level.
       It is important to remember that children with ASD often vary in developmental
       levels across areas. For example, a child may be on level with neurotypical peers
       in communication skills, but lower in social interactions. Even within one area, a
      child‘s skill level can vary, such as being comfortable entering into a conversation,
       but unable to maintain the conversation. With daily living skills, a child may be
       able to set the table with utensils for dinner, but may become overwhelmed when
       asked to clear the table and put away leftover food and dishes.

                                       DRAFT April 2008

   2. Create realistic expectations.
      As expectations are being created for the child, make sure they are appropriate
      for her ability level. Utilize skills that the child has mastered to build confidence
      and encourage the use of new, emerging skills. Take time to teach a task in
      small increments so that if a problem arises, the problem step can be retaught
      and supported. Look for ways to break down complex tasks into smaller pieces
      so the child will be successful. For example, if a child is 18 years old, but
      developmentally 7 years old, do not expect her to do a full load of laundry alone.
      Expect parts of the skills – gathering the dirty clothes, sorting by color and whites,
      or putting away the clothes when the laundry is complete. As the child masters
      one skill, add a step to build the child‘s ability to complete the entire task.
   3. Understand the difference between schedule versus routine.
      Maintaining routine is different from keeping a schedule. For example, a bedtime
      routine may be flexible in the schedule because it is not always precisely at the
      same hour. However, the bedtime routine stays structured in that the child
      always gets to have one book read, is tucked in by a parent, and goes to sleep
      with his teddy bear. This allows for flexibility within the schedule while
      maintaining a routine.
For more detailed information on intervention strategies for a specific routine, refer to
Everyday Solutions: A Practical Guide for Families of Children with Autism Spectrum
Disorders by Mindy Small and Lisa Kontente (

Hygiene can pose challenges for individuals with ASD in multiple areas. Most hygiene
tasks involve lots of sensory information that can be overwhelming. Self-care usually
involves many steps and as well as motor planning. Socially, many with ASD miss the
importance of good hygiene and the unwritten rules that go with visiting public
restrooms and other social situations that relate to care of their bodies. The seemingly
obvious, such as bathing regularly or wearing clean clothes, may not be important to
children with ASD since they may not understand their significance. This understanding
and the skills related to hygiene will need to be taught.

The Unwritten Rules
There are many unwritten social rules related to self-care. Early on, we may be worried
about just teaching the tasks, but as children get older and more self-aware, it is
important to teach them the social behaviors that many of us take for granted. The
following are just a few examples of the ―hidden curriculum‖ that must be directly taught
to children with ASD.
                              Public vs. Private Behavior
      Teach proper urinal behavior for boys such as not lowering pants fully to the
       ground or looking at others‘ body parts while toileting.

      Make it clear that scratching or adjusting one‘s private parts or underwear is not
       to be done in public.

                                       DRAFT April 2008

      Teach that it is not appropriate to pick one‘s nose in public.

                                     For Teenagers
      Help them learn what is ―in‖ and what is ―out.‖
      Help them understand how much first impressions count.
      Help them see how hygiene can affect relationships and even employment.

Crump, M. (2005). No B.O.: The head-to-toe book of hygiene for preteens. Minneapolis,
     MN: Free Spirit.
Myles, B. S., Trautman, M. L., & Schelvan, R. L. (2004). The hidden curriculum:
      Practical solutions for understanding unstated rules in social situations. Shawnee
      Mission, KS: Autism Asperger Publishing Company.
Schaefer, V., & Bendell, N. (1998). The care and keeping of you: The body book for
      girls (American Girl Library). Middleton WI: American Girl.
Although challenging, teaching children to take proper care of themselves is a huge
step towards independence. Many of the tools used to help in other areas are equally
helpful when it comes to personal hygiene. For example, visual/written schedules, social
narratives, desensitization, and gradual exposure to a task can all be used to help
individuals with ASD learn new tasks

                                         DRAFT April 2008

Haircuts, Hair Combing, and Nail Trimming
Consider the sensory issues that are involved with these tasks. Hands and heads are
some of our most sensitive areas. Select among the following options for making this a
less traumatic experience for your child with ASD.
       If your child is a sound sleeper, trim hair and/or nails at night.
       Find a hair stylist who will come to your house.
       Play relaxing music or find a distracting toy, video game, or favorite show to
        occupy the child while the haircut or nail trim is occurring.
       If going to a stylist, visit the shop several times before actually going for a haircut.
        Use pictures or video to illustrate what is going to happen.
       Pick a time when the shop is not so busy.
       Go frequently, even for just a small trim, rather than wait a long time between
       Experiment to determine whether clippers or scissors are better. Some children
        like clippers because they can make the cutting go faster, but they can also
        sound louder.
       Consider combing hair more than once a day to get used to the sensation.
       For nail trimming, do a finger at a time with breaks in between until more
       Put hygiene checks in schedules. Remember: If it is not seen, many do not think
        about it. Simply reminding them to look in the mirror may be enough.

Hand and Body Washing
Preferences are important for motivation. Consider the following:
   Does your child prefer aromas or textures for soap? Consider foam vs. bar vs. liquid.
   Does your child prefer a certain water temperature?
   Does your child like soft or rough washcloths and towels?
   Does your child prefer a schedule or list of tasks to be performed while washing?
   Is hand-over-hand support provided to help the motor planning and memory?

                                          DRAFT April 2008

Becoming toilet trained is one of the most important skills that your child will need to
learn, and it is not easy. It takes real commitment from parents and caregivers, but it
can be achieved with a systematic approach. This text is only a brief outline of one
method. Refer to the resources after this section for more information on toileting.
To begin the process, your child should be able to:

    • Follow simple directions.
    • Sit in a chair for 5 minutes.
    • Stay dry for 1-1/2 hours.

Skills Involved in Toileting
Initially, focus on just teaching the child to eliminate in the toilet. Later, teach the other
skills needed to be completely toilet trained, including:

   1.         Recognizing when he has to go

   2.         Waiting to eliminate

   3.         Entering the bathroom

   4.         Pulling pants down

   5.         Sitting on the toilet

   6.         Eliminating in the toilet

   7.         Using toilet paper correctly

   8.         Pulling pants back up

   9.         Flushing the toilet

   10.        Washing hands

   11.        Drying hands

                                                   DRAFT April 2008

Elimination Records
About two weeks before you are ready to start toilet training, start recording when your
child urinates and has a bowel movement to establish her elimination pattern – the
times of each day when she is most likely to wet and/or soil her pants.

 Sunday           Monday          Tuesday          Wednesday                 Thursday          Friday          Saturday
Ti    Pa   Toil    Pants   Toil    Pants    Toil      Pants           Toil    Pants     Toil   Pant     Toil    Pa     Toi
me nts     et              et               et                        et                et     s        et      nts    let

In the Pants column, you will record every hour:
    U=Urinated in pants
    BM=Bowel movement

                                         DRAFT April 2008

If you are putting the child on the toilet, record the results in the Toilet column in the
same way. Do not begin the toilet training process while collecting these data.
    D=Did not eliminate in toilet
    U=Urinated in toilet
    BM=Bowel movement
    U/BM= Both
During these two weeks, there is no failure or success. You are only trying to see what
your child‘s elimination pattern is so that you can set up a toileting schedule that makes
sense for her.

Determining a Toileting Schedule
   1. Carefully analyze the Elimination Record. At this point, decide whether you will
      focus on urine or bowel training. For this example, we focus on urine training.
   2. Circle all the U‘s on the forms and add them up.
   3. There will be a greater number of times for urination. Select four or eight times
      during the day when your child is most likely to eliminate. No two times should be
      closer than 1-1/2 hours.
   4. Arrange the toileting schedule so that your already established toileting times for
      bowel training become a part of it.
   5. Take the child to the toilet at all the schedule times.
Putting the Child on the Toilet
The bathroom routine should be:

   1. Bring your child to the bathroom on schedule or when she signals. Pull her pants
      down to below the knees, encouraging her to do the rest..

   2. Have her sit on the toilet for 5 minutes. Stay with her, praise her, and explain
      what is expected in a straightforward, non-demanding way.

   3. If she eliminates, praise her and give her a reward.

   4. If she does not eliminate, remove her from the toilet, and take her out of the
      bathroom for 10 minutes. Return to the bathroom for another 5-minute sitting.
In the beginning, going to the toilet should be a casual matter with little required on the
child‘s part other than to sit. In a 20-minute period, give your child two 5-minute chances
to eliminate with a 10-minute break in between.

                                        DRAFT April 2008

Using Visual Cues
You may create visual cues, consisting of photographs or pictures, to support the toilet-
training process. A good aid to use during toilet training is a visual schedule to help the
child through the toileting procedure. See an example of a visual schedule at the end of
this section.
In addition, a special visual prop can be helpful in setting the tone and in alerting your
child to the activity. An example is to give the child a rubber duck when you want him to
use the bathroom. Parents of nonverbal children may also consider incorporating sign
language into the routine and teaching the child the sign for toilet so the child will learn
to indicate when he needs to use the restroom.

Intensive Training
Another method is called ―intensive training‖ or ―weekend training.‖ It consists of
spending the entire day in the bathroom focused entirely on toilet training. This
approach also uses the Elimination Record to record times when the child was placed
on the toilet.
Using this method, the child is dressed in only a shirt and remains on the toilet until he
eliminates. Once the child eliminates, he is given a 5- to 10-minute break, then placed
on the toilet again. The child is given plenty of fluids and salty snacks to encourage
elimination. Parents use favorite toys in the bathroom to occupy the child.

Sensory Issues
Parents face some consistent problems relating to sensory dysfunction when trying to
toilet train a child with ASD. Many children on the spectrum are sensitive to such things
as the feel of the water splashing from the toilet, the texture of the toilet paper, the
sound of the flushing, the feel of the toilet seat, and the list goes on. It is not uncommon
to see the following demonstrated by some children with ASD:
     Flushing or playing with water in the toilet
     Playing with toilet paper
     Smearing feces
     Being ―addicted‖ to diapers
     Refusing to wash hands
     Refusing to eliminate in toilet
     Afraid of flushing
     Refusing to sit on toilet

                                       DRAFT April 2008

Set the Stage for Success
Be consistent: Keep the toileting routine as consistent as possible so that your child will
come to expect it and be at ease with it.
Use a regular toilet from the beginning: If your child is too small, place a smaller seat on
top of the regular toilet.
Avoid distracting toys and people: It is important for your child to learn that the bathroom
is not a playroom; he is there for one reason only, to eliminate in the toilet.
Avoid distracting talk: Talk to your child about what he is supposed to be doing and
what the toilet is for. Avoid talking about unrelated matters.
Azrin, N., & Foxx, R. M. (1988). Toilet training in less than a day. New York: Pocket
Baker, B. L., Brightman, A. J., Blacher, J. B., & Heifetz, L. J. (2003). Steps to
      independence: Teaching everyday skills to children with special needs. Balti-
      more: Brookes.
Dalrymple, N. J. (1991). Toileting: Functional programming for people with autism.
      Indianapolis: Indiana Resource Center for Autism.
Wheeler, M. (1998). Toilet training for individuals with autism and related disorders: A
     comprehensive guide for parents and teachers. Arlington, TX: Future Horizons.

                          DRAFT April 2008

               Toilet Training Visual Schedule

Pull down pants
Pull down underwear
Sit on toilet
Use toilet paper
Pull up underwear
Pull up pants

                                        DRAFT April 2008

Human Sexuality
Eva Markham, Ed.D.
When we think about sexuality, we tend to fast forward to romantic, consensual
relationships between adults. Most of us, as parents, would prefer not to spend a lot of
time thinking about our children and sexuality. Somewhere along the line, we may
impart a few choice nuggets of information about physical growth and development.
Most parents also attempt to communicate their personal values on topics such as
premarital sex, same sex relationships, etc. Much of what is viewed as a part of the
general area of sexuality is very socially derived. For this reason, it is imperative that
caregivers and educators who care for young persons on the autism spectrum take a
life-span approach to sexuality. This is of value for two reasons. First, the young person
can develop to the fullest of her or his abilities and have the skills necessary to engage
successfully with another person in a romantic/ sexual relationship if that is her or his
choice. Second, and sometimes more important, teaching the complex nuances of
sexuality may enable young persons with an autism spectrum disorder to avoid
becoming the object of criticism or scorn for exhibiting behaviors that others find
offensive or sexually inappropriate. Some common examples include the youngster with
autism who fails to develop the sense of modesty typical peers usually get around
puberty, or the young woman with autism who is too direct in her expression of interest
in a young man she has met.

Individuals who are involved with youngsters having autism spectrum disorders may
wish to peruse some of the links appended to this article and decide how best to
approach the topic of sexuality/ sex education given her or his own values and comfort
level. In all likelihood, it will be helpful to recognize that a much more structured
approach to teaching in this area may be needed for the individual with autism. While
those of us who are ―typically developing‖ likely learned a lot about sexuality and related
topics through observational learning and through our peer relationships, this mode of
information will be less successful for persons on the autism spectrum. To view the
component parts of sexuality education as ongoing and natural will be helpful. Thinking
in terms of such broad areas as public versus private, acceptable versus unacceptable,
safe and unsafe may make it easier to approach the myriad behaviors that comprise
sexual behavior. Just as we have learned that certain teaching strategies are better for
educating persons having autism, so can we use those same techniques to assure that
the individual is prepared to be a safe, happy, and successful member of our culture,
equipped with all the skills she or he will need to form lasting relationships if that is his
or her choice. We can be assured that we have added to the quality of life of persons
with autism spectrum disorders. Last, but not least, we can consider that we have
enabled the individual to be safer, and less likely to be victimized or penalized.

                                      DRAFT April 2008

When children become teenagers, their bodies start to dramatically change. They begin
to grow pubic and underarm hair. They start to break out with acne. Girls begin to
menstruate. Boys‘ voices change. For teenagers with ASD, these changes to their
bodies may be frightening if they are not forewarned and prepared.
Parents need to decide the best way to talk with their teenagers with ASD about human
sexuality based on their beliefs and traditions. Basic introductions should address the
following topics:
   1. Describe the basic physical changes that occur on the outside of the body during
   2. Describe the basic physical changes that occur inside of the body during puberty.
   3. Describe the basic emotional changes that occur during puberty.
   4. Identify ways to manage or handle these changes.
Puberty can be an exciting time in a young adult‘s life. It‘s the time when the body
makes many changes – both physical and emotional – to prepare for adulthood. It is a
good opportunity to teach teenagers with ASD about their bodies and how they work. This is an excellent resource for
parents urging a comprehensive, proactive approach. The material is about sex
education. This link is for Jerry
and Mary Newport‘s book about autism and sexuality. The
material on this site includes an overview of sex education and nice suggestions about
teaching strategies. An overview to sexuality in the context of
development is well-presented. In this article an excellent case is made for
proactive parental attention to sex education for the young person with an autism
spectrum disorder. Good information about the
need for a positive, educational approach to sexuality is provided. The Indiana Resource Center has
many good resources. Here we have a good bibliography
for learning more about the topic.

                                  DRAFT April 2008

     Typical Changes                        Changes in Girls     Changes in Boys
Increased attention to physical      Growing breasts           Erections

Interest in romantic love            Beginning periods         Wet dreams
Increased need for                   Premenstrual syndrome
Unpredictable changes in mood
Desire to be accepted and liked
by your peer group
Pubic and underarm hair

                                       DRAFT April 2008

All too often, we hear about stories such as these:

A boy in Florida slipped out of a house crowded with family members during a holiday
celebration. He was found in the bottom of a pool, said Wendy Fournier, president of the
National Autism Association.

Many children with autism, unfortunately, do not recognize safety issues when they
arise. They also may have difficulty identifying an oncoming dangerous situation. With
many of our children unable to clearly communicate to other individuals or understand
what someone may be saying to them, they are capable of being in great danger more
often than not.

Children with autism can be very curious individuals, to the point that wandering from
home is more common then the general public realizes for these families. Many times,
we hear of stories of children with autism wandering into the streets, pools, and woods.
Many times, we hear of the sad ending when these children were not found until too late.

These incidents can happen any time of the day or night, whether a parent, babysitter or
grandparent is watching the child. These incidents also happen at relatives homes and
when people are off guard. There could be many people at the home for a family
gathering and the child slips away easily. Other times, the child darts out of the house
and is gone in an instant.

The following are suggestions to help increase the safety of your child in his or her

   1) Take a walk around your neighborhood streets and see how many have fences,
      wooded backyards or pools exist. Get a sense for where there would be a
      chance that if your child wandered off, you would have an idea where to look.
   2) Check your own house for windows and doors and the types of locks are on
   3) Circulate photos of your child to neighbors and let them know a child with autism
      lives close by. Make sure they have your name and phone number. Many
      children with autism do not know this information, especially their phone numbers.
   4) Visit the local police and fire stations with a photo of your child, if at all possible.
   5) You may want to investigate the use of tracking bracelets with GPS devices.

Besides the risks of a child that could escape from home, there are also dangers inside
the home at various times of the year. During the holidays, you need to be very
cautious with Christmas trees and decorations, especially if your child is a climber.
During the summer months, you may be cooking outdoors on the grill and the pool
dangers are evident. Screen doors may not be locked at all times.

                                       DRAFT April 2008

If your child has ever escaped from your house, this is a warning sign and you need to
take action. Everyone who works with your child needs to know this could happen
under their supervision.

Consider the many behaviors an individual with autism may engage in that could be
unsafe: climbing, throwing, breaking, jumping, peeling, cutting, pulling down, throwing
utensils, plates and cups, sweeping items off surfaces, dumping drawers and bins, and
climbing out of or breaking windows. Or consider what can happen when natural
curiosity and household appliances converge: putting items in appliances, flushing
things, touching burners, turning hot faucets, inserting items into electrical sockets,
chewing on wires, and crawling in a washer or dryer. Finally, consider the potential
dangers that can result from playing with matches, lighters or fire.

Often children with autism who display such behavioral concerns do not understand the
ramifications of their actions, which, at best, can be bothersome and, at worst, can be
devastatingly tragic. Therefore, it becomes incumbent upon the caregivers in the home
to provide both a safe environment and ways to teach their children to be safe.

There are several environmental and safety modifications that can be made in the home
as well as steps that can be taken to prevent unsafe or inappropriate behaviors. The
following suggestions have been found to be helpful in preventing dangerous behaviors
and ensuring a safer environment. The suggestions range from using locks for security
or limiting access to the individual to labeling every functional item and area in the home
with photographs or symbols to assist in communication.

Sometimes parents balk (initially) at the idea of having to place locks on doors or
cabinets, having to place alarms outside a child's bedroom, or having to label the house
with photos or cards. They often say: "This is not a classroom." However, your home is
indeed a natural learning environment, just like a classroom.

Establish priority areas for modification. Modify the most important areas first - such as
the individual's bedroom, bathroom, leisure areas, kitchen, and back yard - since these
are the primary areas of interaction for many children. When getting started, think about
the room(s) in which the child spends the most time; for some children it would be a
recreation/ family room, for other children it might be the bedroom or kitchen. In addition,
consider the behaviors to be modified and the relationship of those behaviors to the
environment Behavior modification works to alter an individuals behavior through
positive and negative reinforcement. Remember that behaviors always serve some
purpose, and in order to alter a particular behavior it must first be understood. If the
individual likes to put things in the toilet or run hot water in the bath, modifications
should begin in the bathroom. If the child runs out of the house, modifications should
begin with securing exterior doors with locks.

Elopement or Wandering

                                        DRAFT April 2008

Have you ever found yourself worrying about your child wandering off and getting lost?
All parents are concerned about their child‘s safety – whether the child has special
needs or not. However, the concern of parents of children with ASD is often heightened
due to the child‘s deficits in communication and socialization.
You can use direct instruction to teach your child that wandering away is not appropriate.
You can use stories to explain that it is dangerous for your child to leave your house or
yard. Still, some children and adolescents with ASD have an overwhelming desire and
talent for leaving their homes and wandering unattended. This does not only happen at
home. Children often wander away from a parent at a busy store or at the park. This is
very dangerous because most children with ASD do not understand or obey the rules of
the road or private property.
Neighbors can be very helpful in keeping an eye out for your child. Talk to them and
explain what to do and how to approach your child if they should see him out alone. You
can also inform neighborhood children and teenagers about what to do if they see your
child out alone.
Make sure to contact your local police and fire department to alert them about your child
and his tendency to wander. They should be able to ―red flag‖ your telephone number
and home if you ever call 911. This specific information may be embedded in the 911
database, so that the dispatcher will be able to tell the police and fire department about
your child before they arrive.
If wandering is a typical problem for your child, you can install extra locks on all exterior
doors high enough so the child cannot reach them, even when standing on a chair.
Many parents have installed sliding bolt locks on the top frame of the door. There are
also bed and door alarms available to signal when a child or adolescent is out of bed or
opens a door or window. You can even get an alarm that plays a recorded message
when a door is open, like ―Jack! Do not leave the house!,‖ and then sounds a siren to
alert the parent. Children or adolescents can also wear bracelets that trigger an alarm
once they pass through a protected doorway.
A very helpful precaution is to have a medical identification tag for your child to wear
that lists name, diagnosis and contact information. These can be ordered at a drug store
or online from MedicAlert. These medical emblems can be worn on the wrist, around the
neck, or laced into a shoelace.

                                        DRAFT April 2008

To be prepared, parents can create an emergency handout about their child for the time
when they do wander off .

                 Sample Autism Emergency Contact Handout
If your child is a habitual wanderer, keep a copy of this handout at home, at school,
in the car and on their child in case of an emergency. the sheet should include the
following information:
          Name of child
          Current photograph and physical description, including height, weight, eye
           and hair color, any scars or other identifying marks
          Names, home, cell and pager phone numbers and addresses of parents,
           other caregivers, and emergency contact persons
          Sensory, medical, or dietary issues and requirements
          Inclination for wandering and any atypical behaviors that may attract attention
          Favorite attractions and locations where child may be found
          Likes, dislikes – approach and de-escalation techniques
          Method of communication. If nonverbal – sign language, picture boards,
           written word
          ID jewelry, tags on clothes, printed handout card
          Map and address guide to nearby properties with water sources and
           dangerous locations highlighted

Out in the Community
As parents of a child with ASD, we are familiar with our son‘s or daughter‘s behavior,
but others may not be accustomed to this disorder. Most of our children appear normal
to others. It is only when they start to exhibit bizarre or out-of-control behavior that they
come to the attention of others. Outings in the community can be a great challenge for
most parents.
                               Tips for Successful Outings
          Keep outings short.
          Do what you say you will do in the order you say you will do it.
          Decide on the optimal number of stops.
          Do the most important things first.
          Prepare a visual schedule for your child.
          Offer a reward at the end of the outing for good behavior.

                                       DRAFT April 2008

Shopping Trips
One of the biggest challenges a family faces is the weekly shopping trip. Sometimes it is
considered more trouble than it is worth. However, shopping is a basic skill that needs
to be learned by children with ASD. Indeed, shopping trips are a good opportunity to
teach your child to become more independent.
   1. Create a visual shopping list using visual symbols with the list on one side and a
       completed list on the other side that may be used during the shopping trip (see
       example at the end of this chapter).
   2. Involve the child in the selection process. For example, if you are buying a dozen
       apples, have the child select them. Point out if one has a bruise so he can learn.
   3. Bring handheld toys or action figures to occupy the child.
   4. Allow the child to help push the cart once she is older and no longer fits in the cart.

Issues of Faith
For many families, attending religious services is an important part of family life. It is
intended to be a time of worship and quiet reflection, but when a child with ASD attends,
it can be anything but quiet.
Nevertheless, a family‘s place of worship can be a source of comfort and support. While
some families are established within a faith community, others may be new to religious
life having turned (or returned) to their faith as a source of strength upon the diagnosis
of their child. Dedicated members of your faith community may be able to assist your
family in various ways, from offering a listening ear to providing assistance in your home.
A faith community may provide a comfortable setting for companionship and support.
Including a family member with ASD in religious services and activities may require
some creative planning. Many religious bodies have programs for people with
disabilities within their religious communities (see Resources at the end of this section).
While not autism-specific, these programs may provide a blueprint for personalizing a
program for your child.
It may be beneficial to request a meeting with the appropriate leader(s) in the faith
community to discuss options for including your loved one in religious activities. Ask a
teacher or service provider who may be of the same religious affiliation to accompany
you and provide information about the kind of structure and support your child needs.
This ―team‖ can be a valuable resource.
Consider all the sensory stimulation during a service, including music, singing, stained
glass windows, candles, flowers, and incense, which all together may be a lot for your
child with ASD to handle. Here are some ideas to help entertain your child:

       1. Personal stereo with headphones to block out extraneous sounds
       2. Coloring books and washable crayons/markers
       3. Picture books

                                       DRAFT April 2008

   4. Stuffed animal or another comfort item
Some have questioned whether or not it is wise to teach religion to a person on the
spectrum, the argument being that religion is too abstract to grasp. If your faith is an
important part of your family tradition, do not be discouraged from seeking an
appropriate environment for religious training and fellowship. If you are not looking for
an in-depth religious program, it may still be wise to teach your child about the various
religions and denominations to which he may be exposed. In her adult life, she may
receive services from a faith-based organization and should be respectful of the
caregivers‘ beliefs. Likewise, it may be necessary to teach your child strategies for
politely declining unwanted invitations from religious organizations she (or you) do not
wish to be affiliated with.

Autism Society of America includes two articles on religion and autism
The Baha’is of the United States are in the process of developing materials on ASA.
     These resources will be available in the Fall of 2007.
Bethesda Lutheran Homes and Services, Inc., is dedicated to sharing Christ‘s love
     and providing services and benefits to individuals with developmental disabilities,
     their families, and others who support them.
Council for Jews with Special Needs works to provide the necessary supports and
     resources for individuals with disabilities to participate in the Jewish Community.
Friendship Ministries is a not-for-profit organization that helps churches and
      organizations share God‘s love with people who have cognitive impairments.
Jewish Council for Disabilities is an organization dedicated to enhancing the life
     opportunities of individuals with special needs insuring their participation in the
     full spectrum of Jewish life.

                                       DRAFT April 2008

National Apostolate for Inclusion Ministry supports the inclusion of persons with
      mental retardation in the Catholic Church.
National Council of Churches Committee on Disabilities seeks wholeness in
      Christ‘s church by promoting the full inclusion, participation and contribution of all
National Organization on Disability has a section of their website devoted to religious
      participation. If includes a variety of interfaith resources and information. (link on left of page for religious participation)

Eating out can be a fun family excursion as long as you keep some basic strategies in
mind. Don‘t let autism keep you from the activities and places you and your family enjoy.
   1. Sit in a booth with the child with ASD on the inside to prevent bolting.
   2. Have plenty of napkins available.
   3. Remove all condiments and drinks from the child‘s reach.
   4. Have a snack or activity ready for the child when you sit down to occupy her until
       the food arrives.
   5. Take walks to the bathroom or arcade games to allow the child to explore the
       restaurant under your supervision.

Family vacations – no matter how longed for – can pose difficult issues. The most
important thing to remember is to maintain as much of a routine as possible for a child
with ASD. For example, have the child awake at his normal time, followed by breakfast
and maybe watching television as a way to start the day. It is also important to keep the
child‘s sleep schedule the same.
Creating a travel book may be a good planning device for your child. It can include
pictures of the kind of transportation you will be using, who you are going to visit, where
you will sleep, and what you will do or see at your destination. Also, remember to pack
some of his smaller toys that will occupy him and remind him of home.

                                       DRAFT April 2008

Use your vacation destination as a way to experience new sensory activities, without
overlooking your child‘s fragile nervous system. Textures, sounds, sights, colors, and
music are just some examples of sensory experiences. Here are some ideas for guiding
sensory experiences on vacation.

   1. Going to the beach and playing with sand.
   2. Walking through a forest and feeling the different leaves.
   3. Exploring a museum, identifying colors and shapes.
Make sure to take a lot of photographs of the places you visit to make a special memory
scrapbook once you return home. Collect items from your trip like brochures, postcards,
rocks, leaves, and other mementos to use in the scrapbook (remember to bring an
empty coffee can or ziploc bags to store the nature items).

Preventing Meltdowns in a Public Place
As any parent knows, when your child (typical or ASD) has a meltdown in public, it can
be embarrassing and frustrating for yourself and other family members. Prepare ahead
of time for going out in public. You can do this by creating a schedule of events,
including pictures or drawings to illustrate what will occur and review it with the child
before the trip. Sometimes you can even prepare a basic schedule on a napkin or a
piece of paper to help your child understand what is going to happen. You can also
bring an object that your child finds comfort in, or read a social narrative about the event
ahead of time to prepare for the outing. These are just a few suggestions on how you
can provide some predictability for your child before going into the community.

Handling a Meltdown in a Public Place
Always remember that your child with ASD does not want to have a meltdown, so be
patient and compassionate. However, when a meltdown does occur, the child is usually
in extreme distress and may lose control of her raging emotions. When a meltdown
does occur, try to remember the following:
   1. Only move the child if there is an immediate safety concern. Moving the
      child while he is having a full-blown meltdown can be dangerous for you and the
      child, because he is unable to process what is happening.

   2. Do not try to give your child whatever he was asking for before the
      meltdown to stop it. This advice is not to say you should not give in and let the
      child have his way. It is because during the meltdown he is unlikely to be able to
      respond to the object or even process the fact that he has it.

                                       DRAFT April 2008

   3. Step back and do not intervene unless your child asks you to. At this point,
      your job is not to try and calm him down; it is to wait. A child can rarely express
      his immediate needs during a meltdown.
   4. If there are others close by, move them. Well-meaning people may try to help,
      but tell them very clearly to stay back because their presence will only escalate
      the situation. This is when the autism awareness cards may be helpful (see box).
   5. Make sure your own reactions don’t escalate. Try to step back and disconnect
      enough so that you are not caught up in your child‘s intense emotions and try to
      think rationally.
   6. Try not to take it personally. It hurts when our children are angry and lash out
      at us, but try thinking of it as a symptom of something your child has, not who he
   7. Take this opportunity to step back to observe your child carefully. Pay
      attention to his environment to determine if there are triggers – lighting, noise
      level, etc.
   8. Do NOT restrain your child. However tempting, restraints may reinforce future
      meltdowns because some children find deep pressure relaxing. It is not only
      potentially dangerous for you and the child, in the long term, restraining is
      ineffective. THE ONLY EXCEPTION is when your child is hurting himself or
      others, or is in danger.

Myles, B. S., & Southwick, J. (2005). Asperger Syndrome and difficult moments:
      Practical solutions for tantrums, rage, and meltdowns (2nd ed.). Shawnee Mission,
      KS: Autism Asperger Publishing Company.

When the Child Hits the Parent
There may come a time when your child hits you. First and foremost, do not take it
personally. Your child is trying to communicate with you and may not be able to do so in
a functional manner when in a state of distress. The following are important things to
keep in mind.
   1. Your child may not remember she did it.
   2. Determine if he purposely hit you, or if he was flailing and randomly and
      accidentally hit you.
   3. Review what you might have done to inadvertently contribute to the child
      physically acting out toward you during a meltdown.

                                      DRAFT April 2008

   4. Decide whether to bring up the hitting after the incident.
   5. Make sure your child knows that you forgive her when she makes a mistake,
      whether intentional or not.
   6. Call on your support group to get emotional support and to discharge some of the
      emotions you are feeling if necessary.
   7. When you are of a clear and rested mind, you will need to ask some questions –
      is this an ongoing pattern and do I need to seek help from a behavior

If you want to make your own autism awareness cards, here is the copy you can put
on each side of the card.

                       Examples of Autism Awareness Cards

                                         Side One
If you are puzzled by my child‘s behavior????? It is not boldness or lack of
discipline!!!!!!!! My child has autism …

                                         Side Two
Autism is a life-long neurological disorder that prevents the person from understanding
what he sees, hears, or otherwise senses. People with autism often become confused
and respond inappropriately in social situations. Autism strikes 1 out of every 150

You can also make a card with the following messages:
Our son has autism, a severe language and behavioral disorder. He sometimes
becomes confused, disoriented, or upset and may throw temper tantrums or scream.
We are committed to teaching him how to function in the community and would
appreciate your patience and understanding. If you would like to learn more about
autism, please feel free to contact us or the American Autism Society (1-800-3Autism).

This young person has autism/Asperger Syndrome. It is a developmental disability that
affects social and communication skills. People with autism tend to behave in an odd
and unpredictable way as a result of their disability. Please help us by being
understanding and showing tolerance.

                                        DRAFT April 2008

Sakai, K. (2005). Finding our way: Practical solutions for creating a supportive home
       and community for the Asperger Syndrome family. Shawnee Mission, KS: Autism
       Asperger Publishing Company.
Sicile-Kira, C. (2004). Autism spectrum disorders: The complete guide to understanding
       autism, Asperger’s Syndrome, pervasive developmental disorder and other ASDs.
       New York: Perigee.
Tilton, A. J. (2004). The everything parent’s guide to children with autism: Know what to
        expect, find the help you need, and get through the day. Avon, MA: Adams
        Media Corporation.

Preparing Your Child for a Medical Appointment
Not unlike most children, children with ASD are not particularly fond of going to doctors.
The experience can be traumatic because there are many sounds, sights, and smells
that can seem frightening to them. It is extremely important that before going to a
physician‘s appointment, the child is prepared and provided with an understanding of
what will take place at the appointment.

Preparing the Medical Environment
When initially setting up the appointment, whether for a routine pediatric visit, a dental
appointment, or a visit to the hospital, mention your child‘s diagnosis to be sure it is
added to the chart, if it is not already included. Ask that it is noted in a prominent spot so
that all involved will be aware prior to meeting your child. This is meant to benefit your
child. With proper information, even the initial interaction with the nurse or receptionist
can set a positive tone for your child‘s visit.
Three to four days prior to your child‘s visit, call the office to touch base again. Ask what
the routine and wait time will most likely be for your child‘s appointment. They should be
able to tell you about transitions and specific steps (such as being weighed, measured
for height) that will be included in the routine. Confirm that they are aware of your child‘s
diagnosis. Explain the specific characteristics of your child and express any stress
triggers that might bother him. Suggest adaptations that could be made to ensure that
the transition and actual appointment will proceed quickly and smoothly for everyone.
Suggestions may include the following:

                                          DRAFT April 2008

      With medical professionals, reviewing the environment with the child in mind
      Limiting the number of people who will be involved in the child‘s care
      Designating a medical team member as the child‘s procedure coach
      Providing sensory items to help the child self-regulate
      Preparing the child for surgery or a physician‘s appointment according to the
       child‘s developmental level, not the child‘s chronological level
      Using visuals to help the child understand what will occur
      Providing simple, step-by-step information
      Developing coping techniques that are specific to your child, such as talking
       about the visit ahead of time and looking at pictures of the physician‘s office and
If the visit to the hospital is an emergency and advance notice was not given, be sure to
let the medical team know about your child‘s characteristics, needs, stress triggers, and
sensory preferences as soon as possible. Putting these items in writing prior to arrival
and bringing them with you will make it easier to convey the child‘s needs to the medical
staff as well as give them a framework for how best to interact with your child in this
emergency situation.

Preparing Your Child for the Medical Environment
Tell your child she will be making a visit to the doctor or dentist. Do not surprise her with
this information upon arrival. All children are nervous about a medical visit, but giving
them information in advance allows them to process, anticipate, and better absorb the
reality of what will occur around them. It allows them to predict what will occur so they
are not caught off guard by the flood of new sights and sounds around them – a major
consideration for children with ASD.

Giving Information
Information should be given on your child‘s level, in the amount and manner in which
your child can best understand it. If you are able to obtain pictures of the actual office,
use them. Often major children‘s hospitals have online virtual tours, with photos
describing a visit to the hospital, or they allow you to visit the hospital for a tour prior to
your actual visit. If these options are not available, consult children‘s books that depict a
visit to the doctor, dentist, or hospital. It is important to familiarize your child with titles of
people, equipment that might be used, the routine of the environment, and steps of the
actual procedure, if at all possible.

                                        DRAFT April 2008

Create a story specific to your child‘s visit. Include details such as:
       Steps in the routine
       Making transitions to different rooms
       Waiting in certain areas
       Wearing special pajamas during the visit
       People your child will meet
       Equipment your child will see
       Sights, smells, and sounds that your child will encounter
Add details that make your child‘s trip unique such as:
       Who will accompany him
       What he can bring with him
       What he will do when the visit is over
Ask your child open-ended questions about what he is feeling and which steps seem
hard or easy. Help him make a plan to be successful, and remind him that it is okay to
ask questions if something comes up he does not understand. Create a portable, step-
by-step visual, such as a photo flipbook or a written schedule of each step. Make sure
the schedule outlines the details you have discussed and the coping techniques chosen
by your child to help him with the visit. This predictability will give your child a sense of
control as he ventures into an often unsettling encounter.

Medical Play
In addition to specific information about the encounter, allow your child to play through
the medical experience. Refer back to the children‘s books and provide your child with a
medical doctor‘s kit. Encourage your child to be both the doctor and the patient during
various play series. Do not interrupt your child even if she engages in hostile or
aggressive play, unless it is endangering her own or others‘ safety. Sit back and
observe what your child is expressing through words and actions. After the play
sequence is finished and your child is in a state of attention, talk with her about what
you observed and directly answer all the questions you can. Give honest information,
using soft language so as to not frighten your child, but provide accurate information.

Use a Transitional Item
Plan a transitional item that your child can bring to accompany him on his journey. This
may be a favorite stuffed animal, a blanket, or some special treasure. This item allows
the child to cling to something he is familiar with in the midst of an unfamiliar and
invasive environment. Create a plan with the child as to who will hold the item during
various steps in the procedure. The object may have to be out of the child‘s hands at
times, and it is better if this is discussed prior to the moment when the child is being
asked to release the item. If a plan is in place, the child can be reminded that the item
will only be out of his hands for a few moments and returned during the next step.

During the Medical Encounter
In addition to all the advance preparation, your child will need you as a coach during the
actual medical encounter. Encourage him to bring along the portable visual you created

                                        DRAFT April 2008

to support him through his visit. Be sure to leave space for flexibility, as the medical
environment often entails emergencies or unforeseen delays.
As each step takes place, indicate to your child that it is over by crossing it off or turning
the page of her special book or visual. Reiterate the lessening number of steps left.
Remind your child that she successfully completed previous steps and then guide her
through the step that is next. For example, ―Great job getting weighed. You have
already finished three steps. You arrived at the doctor‘s office, waited in the waiting
room, and got measured and weighed by the nurse. Now we are waiting for the doctor
to come in.‖
You can also review previously chosen coping techniques or offer new choices on the
spot. In the midst of the medical encounter, provide your child with limited choices. For
example, ―While we wait for the doctor to come in, do you want to play ‗I Spy,‘ read your
book, or talk about Star Wars?‖ Be sure to only offer choices that are available. Coping
choices may change for different steps because of restrictions of body movement, room
changes, or the effect of medication.

Hudson, J. (2006). Prescription for success: Supporting children with autism spectrum
     disorders in the medical environment. Shawnee Mission, KS: Autism Asperger
     Publishing Company.

                                        DRAFT April 2008

―Your Next Patient Has Autism,‖ North Shore Long Island Jewish Health System:

Leisure Activities
Leisure activities are something everyone enjoys and looks forward to. To the extent
possible, children with ASD also need and should participate in leisure activities as
individuals, in groups of peers, and with their families. By using your child‘s interests
and strengths, encouraging skill building in small steps, and creating a fun and well-
supported environment, leisure activities can be enjoyed by all.
                Sample Community Activities to Consider for Your Child
       Playing on a sports team            Playing outdoors
       Visiting the library                Visiting a museum
       Scouts                              Reading
       Religious groups                    Playing board games
       Going to a birthday party           Watching a parade, event or sport
The following are some ways to adapt activities and build in support to create success
for your child, given her special needs.

Provide a Framework
Prime your child in advance with information that will create a visual for him and prepare
him for the overall experience. In your description, review items such as:

          The overall environment

          The people present
           Role or function
           Designated ―safe person‖ such as a counselor, activity leader, etc.

          The activity taking place
           Why he is participating
           Working as a team
           Being an individual

          Boundaries and rules
           For the activity

                                         DRAFT April 2008

       Social ―hidden curriculum‖ rules the child may not know

Provide Opportunities
If your child wants to participate in leisure activities, provide the opportunity for her to do
so. You may need to ease her into a group function, so practice first at home playing
one-on-one with your child. Eventually, invite three or four children over to play. Provide
a structured activity for a predetermined, short length of time. As your child develops,
transition her into a larger group, a bigger arena, or a lengthier interaction using
increasingly more skills.
For example, if your son wants to play Little League, teach the basic skills one-on-one
or invite boys to play baseball. Practice throwing, catching, and batting. After your son
learns the subtle rules of team play and develops basic skills, invite the boys over again
for a short game. Eventually, your child will be ready to transition into a full Little League
If your child wants to participate in non-sport leisure activities, practicing at home can
also be beneficial. Create a scenario and role-play with your child prior to an actual

          Pull out shelves of books and a plastic card to pretend you are at the library.
           Review rules of being quiet and how to look for a book.

          For lunch, create a menu of choices. Present it to your child and ask her to
           make a selection. Review table manners, what to do while she waits, and
           choice making.

                                        DRAFT April 2008

Encourage Your Child’s Strengths and Interests
Ask your child in which activities he wants to participate. Getting consent from your child
will increase his desire to participate. Find avenues to pursue the interests and activities
that he loves and in which he excels, and then adapt them for his level of participation
and skill. Create leisure activities and social opportunities out of your child‘s interest. For
example, if your child enjoys reading, start a small reading group, having the children
read a story and complete activities that pertain to the theme. If your child enjoys
playing a particular game, for example, chess, invite others over and create a chess
tournament. If your child likes to play baseball, start a small, informal team in your

Talk with the Leaders
Prior to the event or start of a sport season, visit with the director, coach, or a parent of
a peer to exchange information and create a plan of success for your child. Take time to
explain your child‘s strengths and needs, providing information about sensory needs,
need for visual supports, stress triggers, and how to anticipate and support a potential
meltdown. Ask for information about the routine of the event, gathering as many details
as possible. Also discuss adaptations that would be beneficial and determine how they
will be incorporated.
Often when a child is starting or encountering a new leisure activity parents participate
in a leadership role, such as being a coach or facilitating a troop. This allows you to add
needed support and make accommodations for your child.

Bullying is a pressing issue for many schools. While this damaging behavior affects both
typical children and children with special needs, children with special needs are at more
risk for being targets of a bully. Being bullied can cause kids to experience fear and
anxiety and interfere with school work and self-esteem.
                                     Types of Bullying

      Physical – hitting, kicking, pushing, etc.

      Verbal – name calling, teasing

      Emotional – excluding and ignoring others

      Sexual – touching, teasing, coercing

      Cyberbullying – sending threatening emails, text messages, harassing cell phone
       calls, etc.

                                       DRAFT April 2008

Because children with ASD have trouble with language and social cues, they can
become easy targets for bullies. Further, one of the main ways children protect
themselves from being bullied is to predict the behavior of others and respond
accordingly. Children with ASD have a very difficult time predicting what others may be
thinking. For example, a group of students may talk a child with ASD into doing
something he knows is wrong, but he may think they are trying to be friends and not
realize what they are doing and comply after all. Students with ASD may also mimic
what others do, including bullying others, without understanding the consequences.
They may also try to retaliate.
The best bullying prevention programs involve the whole community and all staff at your
school. Children not only need to learn ways to handle a bully, they also need to be able
to address students who may watch, called bystanders. If your child is reporting
increased headaches, stomachaches, or other physical problems or complaining about
going to school more than usual, consider explaining what bullying is and ask if it is
happening to her.
If your child is being teased, excluded, or harmed repeatedly by schoolmates, take
      Ask about school policies, training, and programs for bullying.
      Ask if there is supervision in hot spots like hallways, lunchrooms, bathrooms, and
       locker rooms. Bullying typically occurs under the radar of adults.
      Ask if there are classroom discussions about bullying.
      Look for teachers who are flexible and can help your child feel more alike than
      Consider using a social story and/or power cards to help your child know how to
       respond to bullies.
      If needed, you can address it on the IEP.

Heinrichs, R. (2003). Perfect targets – Asperger Syndrome and bullying: Practical
       solutions for surviving the social world. Shawnee Mission, KS: Autism Asperger
       Publishing Company.
Gray‘s Guide to Bullying:

Stop Bullying Now:

                                       DRAFT April 2008

                                  CHAPTER 4
Someone you love has been diagnosed with autism – what treatments are available for
autism? What can you do to help them to reach their full potential? Cope in the world?
Autism has no common cause and no known cure. Be wary if someone claims to be
able to ―cure‖ autism, especially if the only information available is from the person
promoting the ―cure.‖ This chapter will describe a variety of treatment options for autism,
guidelines for choosing treatments, things to consider when choosing treatments, and
how to determine if a treatment really helped.
Because there is no common cause, because autism is a spectrum disorder –
that is, symptoms range from mild to severe – and because each individual with
autism is “uniquely autistic,” there is no “one-size-fits-all” treatment. This puts
the burden of determining what treatments will work best for a particular
individual directly on the family and the professionals working with the family.
Treatments and therapies can vary widely in cost and focus.

Research on Autism Interventions
Individuals with autism spectrum disorders require individually designed interventions
that meet their needs. In fact, no one intervention has been universally identified as
being effective for all children with ASD. It is important, however, that parents and
school professionals working together as a team select empirically valid techniques
(National Research Council, 2001; Olley, 1999).

Carefully research and review the information available on the intervention you are
considering. Many books and research journals can aid you in your search. As you read
about various autism therapies, keep in mind the research that has been conducted on
whatever therapy you intend to implement.
To say that a methodology is grounded in scientifically based research means there is
reliable, independent evidence that a given program or practice works. To obtain
reliable evidence about a reading strategy or instructional practice, for example, an
experimental study may be done that involves using an experimental group that uses
the intervention and a control group that does not to see if the method is effective in
teaching children to read. Ultimately, family members and professionals together must
determine whether a particular strategy or method is effective, or if a scientifically based
method is suitable for an individual student.
Research is derived from theory and practice. While not all methodologies are currently
founded in empirically based research (studies that follow specific scientific rules), many
are backed by anecdotal reports (observations of individual cases by parents,

                                       DRAFT April 2008

caregivers, and professionals) of effectiveness. Care must be taken to evaluate each
methodology on its merits and appropriateness for the particular needs of the individual
with ASD.

Association for Science in Autism Treatment
ASAT is a not-for-profit organization of parents and professionals committed to
improving the education, treatment, and care of people with autism. Since autism was
first identified, there has been a long history of failed treatments and fads, levied on
vulnerable individuals as well as on their families. From the scandal of the ―refrigerator
mother‖ theory, to the ongoing parade of ―miracle cures‖ and ―magical breakthroughs‖,
history has been dominated by improbable theories about causation and treatments.
Many of these treatments have been too quickly adopted by professionals, too readily
sensationalized by the media, and too hastily embraced by hopeful consumers – well
before supporting evidence or reasonable probability existed for their effectiveness or
Since ASAT was established in 1998, it has been our goal to work toward adopting
higher standards of accountability for the care, education and treatment of all individuals
with autism.

                                     DRAFT April 2008

          Elements of Effective Programs for Young Children with Autism

As part of the National Early Childhood Technical Assistance Center sponsored Forum
on Autism Spectrum Disorders (1997-2001) a group of representatives from model
programs reached consensus on core elements of effective programs. These have
been published in various formats since they were formulated.

      Program Element           Brief Definition
Earliest Possible Start to      Children receive services appropriate to their needs as
Intervention                    soon as they are identified as having ASD.

                                Adjustments to goals, intervention strategies, and
Individualization of Services   evaluation criteria are made for each child and family
for Children and Families       receiving services, determined by the child‘s needs,
                                strengths, and interests and the families concerns,
                                priorities, and resources.
                                Instruction or intervention that is carefully thought out,
                                logical, and consistent with a conceptual or theoretical
Systematic, Planned             basis and involves planning, implementing, and
Teaching                        assessing, intervention steps; each step is intentional,
                                coordinated with an overall approach, and builds
                                toward meaningful goals.
                                A core curriculum to address specific needs of children
Specialized Curriculum          with ASD, includes these key areas: attending to
                                elements of the environment, imitating others,
                                language comprehension, use of language, playing
                                appropriately with toys and interacting socially with
                                Engagement refers to the amount of time a child is
                                attending to and actively participating in the social and
                                nonsocial environment. Intensity of engagement is
Intensity of Engagement         sometimes expressed as the percent of enrolled time
                                that is spent in teaching interactions, or in activities in
                                which the child is actively learning. The time that a
                                child is engaged in learning opportunities may occur
                                during program time and in home or community
                                Includes family involvement in their own child‘s
Family Involvement              program; services provided to families primarily
                                because their child has ASD; services provided to
                                families that are not directly related to ASD but may
                                impact on overall family functioning; family support and
                                networking; and family involvement in the overall

                                       DRAFT April 2008

Program Elements That Are Part of Some, But Not All Programs
                             Arranging the environment, instructional materials, and
                             teaching interactions to elicit, facilitate, or support
Structured Environments      specific skill attainment or development, including the
                             use of environmental arrangements or visual cues to
                             organize or schedule activities, to facilitate choices,
                             and to define work, play, or rest spaces.
                             Practices that have been designed for all young
Developmentally              children; programs are guided by information about
Appropriate Practices        child development and learning, each individual child‘s
                             strengths, needs, preferences, and knowledge of the
                             social and cultural contexts in which children live.
Intervention in Setting with Some or all interventions occur in settings with typical
Typical Children or in       children. This may include fully integrated settings in
Natural Environments         childcare, preschools, recreation activities, and other
                             supports in home and community.

Additionally the National Research Council‘s Committee on Educational Interventions
for Children with Autism (2001) as reported in Educating Children with Autism,
Washington, DC: National Academy Press (available on-line at

      Active engagement in intensive instructional programming should be provided
       for a minimum of an equivalent of a full school day for 5 days a week (minimum
       of 25 hours per week), including full year programming depending on the child‘s
       chronological and developmental age.

      Teaching opportunities should be planned, repeated, and generally organized
       into brief periods of time for very young children (15 – 20 minute intervals), with
       sufficient amounts of adult attention in one to one and very small group
       instruction in order to meet individual goals.

      There should be no more than two young children with ASD per adult in a

      There should be mechanisms for ongoing assessment and program evaluation
       that are conducted in order to measure child progress and make adjustments in

   Dawson and Osterling (1997) in a chapter, Early Intervention in Autism from
   Guralnick: Early Intervention, Brookes Publishing adds:

          There needs to be a functional approach to behavior where the purpose of
           the behavior is understood and the necessary skills to replace the behavior is

                                   DRAFT April 2008

       Transition planning and implementation is important for future success.

There are many theories and approaches to early intervention for children with ASD,
but there is agreement that it needs to be collaborative, able to be generalized to
natural environments, and be family centered. Further, effective intervention appears
to be relatively intense, intrusive and interactional, requiring adaptations from both
the child and other‘s in the child‘s environment (Bristol & Schopler, 1993). It‘s
important that families and the people providing services have accurate, current
information about autism and understand the child‘s individual needs, then translate
these into individually appropriate strategies. Some of the debate in early childhood
education for children with ASD stems from attempts to mesh strategies that are
teacher directed and behaviorally defined with programs that are child centered and
teacher facilitated where the environment provides much of the structure. Most
children benefit from a combination of approaches and need consistency across
therapist, teachers, caregivers, parents, and all who teach and interact with them
daily. Children with autism are diverse and more information is needed about what
works with each child. It‘s essential to continually assess needs and progress in a
collaborative way so that the changing needs of the child are met. This requires
good data keeping through a variety of means, then data interpretation to make

Bristol, M. & Schopler, E. (1993). Introduction to preschool issues in autism. In E.
Schopler, M. VanBourgondien, & M. Bristol (Eds)., Preschool Issues in Autism, (pp.
1-16). New York: Plenum Press.

Revised and Organized by
Nancy Dalrymple, 2004
For STAR Program at Weisskopf Child Evaluation Center, Department of Pediatrics,
School of Medicine, University of Louisville

                                      DRAFT April 2008

         10 Things To Know About Evaluating Medical Resources on the Web

The number of Web sites offering health-related resources grows every day.
Many sites provide valuable information, while others may have information
that is unreliable or misleading. The short guide at contains important questions you
should consider as you look for health information online. Answering these questions
when you visit a new site will help you evaluate the information you find.

1. Who runs this site?

2. Who pays for the site?

3. What is the purpose of the site?
4. Where does the information come from?

5. What is the basis of the information?

6. How is the information selected?

7. How current is the information?

8. How does the site choose links to other sites?

9. What information about you does the site collect, and why?

10. How does the site manage interactions with visitors?

National Center for Complementary and Alternative
National Institute of Health

                                     DRAFT April 2008

Choosing Interventions
    Choosing appropriate intervention(s) for your child can be confusing; the amount
     of information available in print and on the Internet is overwhelming. The
     following are some important questions to help parents and caregivers make
     decisions regarding the best interventions for their child.

    Does the program/therapy and anticipated outcomes address these targeted

    Does the method meet the unique strengths/challenges/goals for my child?
    Are there any harmful side effects associated with this treatment? What are the
     potential risks? Is there any risk of discontinuing the intervention?
    Are there any activities, foods, and so on, that will be restricted during treatment?
    What positive effects of treatment would I hope to see?
    What are the short-term and long-term effects?
    Can the treatment be integrated into my child‘s current program?
    How will the goals/outcomes be evaluated? How will I know if the child is making
     progress toward desired outcomes? What method will be used to evaluate the
     child‘s progress?
    What is the cost of treatment? Will my insurance company pay for the treatment?
    How much time does the treatment take? Can I realistically devote the time
     required to the treatment?
    Has this treatment been validated scientifically? Have I collected information
     about this from a variety of sources?
    Was I able to interview other parents and professionals about the treatment? If
     so, list pros, cons, and other areas of interest.
    Do proponents of the treatment claim that this procedure can help nearly
     everyone? If so, this should be seen as a ―red flag‖ to slow down and be more
     careful in consideration of this technique, considering the wide range of abilities
     represented on the autism spectrum.
    What do my pediatrician and other professionals involved with my child think
     about the treatment‘s appropriateness?
    Are there alternatives that are: less restrictive? Better researched?

                                      DRAFT April 2008

Determining Effectiveness
Stephen M. Edelson, Ph.D., Center for the Study of Autism, Salem, OR (2007), offers
these important tips for parents and caregivers to help determine if a particular
treatment is effective:

      Implement one treatment at a time. Change one thing at a time, allowing plenty
       of time to see the effects of a treatment. (Edelson suggests at least two months)

      Keep your own data. Keep a daily record prior to the intervention as well as
       during the intervention. Your personal record can help you determine if any
       changes are taking place.

      Seek objective information. Consider, if possible, not telling other adults your
       child may come in contact with about the new treatment to prevent biased

      Collect data from those involved in treatment implementation. Ask teachers
       or clinicians to keep written data. After a period of time, compare others‘ data
       with your own.

      Note unexpected or unanticipated changes. Make note of surprising or
       unexpected changes your child may exhibit.

      Educate yourself about the treatment. Be sure you learn as much about the
       treatment as possible before beginning. Look for both positive and negative
       information. Be aware of possible side effects.
As mentioned, no one treatment will have the same impact on all individuals with ASD.
For this reason, it is important to make informed choices and use written data to monitor

The following are common therapies, program models, biomedical interventions, and
strategies used with individuals with ASD. The section begins with the core deficit areas
of autism and corresponding interventions, some of which are available to children in
the school setting. It does not include research studies for effectiveness of treatment;
rather, the selections are for informative purposes only.

                                        DRAFT April 2008

Communication difficulties, both verbal and nonverbal, are inherent in the diagnosis of
ASD. The typical sequence of communication development is disrupted. As a result,
communication skills can range from nonverbal, gestural, the use of single words, to
verbal conversation, and may include:
      Perseveration (repetitive verbal and physical behaviors)
      Echolalia (immediate and/or delayed ―echoing‖ of words, music, phrases or
      Hyperlexia (precocious knowledge of letters/words or a highly developed ability
       to recognize words but without full comprehension)
      Dactolalia (repetition of signs), pronoun reversals, inappropriate responses to
       yes/no questions, and difficulty responding to ―wh‖ questions
When designing intervention strategies, it is important to understand both the
individual‘s receptive (comprehension) and expressive communication skills. Stressful
situations that increase anxiety often interfere with the ability to communicate. Difficulty
understanding humor, idioms (―keep your eye on the paper‖), sarcasm, and other
complex forms of verbal and written expression is common. Even the highly verbal
individual may understand and use literal (concrete) language, but have difficulty with
abstract concepts needed for higher order thinking skills.
A person‘s communication ability usually changes over time. Therefore, it is important to
maintain an ongoing communication assessment from diagnosis through adulthood as
this provides current information, which is necessary to support appropriate
communication strategies.
Supporting all forms of communication – verbal, signing, pictorial, augmentative devices
(and often a combination of more than one) – promotes learning.

Speech-Language Therapy
During therapy, the child‘s functional communication skills, or the child‘s intent, such as
requesting and protesting, are assessed, and programs are developed to address
communication deficits and improve communication skills. Therapy may occur in
individual settings or in small groups. Families will always be involved in the therapy
process in order to facilitate functional communication across various situations. Parent
and caregiver training is a large component of speech-language therapy to maximize its
Be sure to choose a speech-language pathologist (SLP) who holds a Certificate of
Clinical Competence from the American Speech-Language-Hearing Association (ASHA).
The SLP is a skilled professional who can address the following areas of concern:

                                      DRAFT April 2008

Receptive language – the understanding of spoken or written messages as well as
other forms of language. This includes identifying objects, actions, adjectives,
prepositions, people, and so on.
Expressive language – the production of language. This includes sentence structure,
verb tenses, regular/irregular plurals, length of utterance, and so on.
Articulation/phonology – includes developing speech sound production, the use of
tongue, lips, teeth, and so on, to produce speech sounds.
Oral-motor skills – includes improving the range, rate, complexity, strength, and
coordination of oral motor movements. May also include massage of cheeks, lips, and
gums, brushing teeth, and decreasing teeth grinding.
Feeding and swallowing – includes ability to close lips, manipulate food with tongue,
age-appropriate chewing pattern, and safe swallowing. Other areas that can be
addressed include oral desensitization to different tastes, textures, smells, temperatures,
and consistencies of foods.
Social skills/play skills – includes appropriate social language, ability to read facial
expressions, ability to understand social cues/body language, and age-appropriate play
skills such as sharing, turn taking, and playing independently or with others.
Pragmatics – the use of language in social context.
Cognition – the mental process of knowing, including aspects such as awareness,
perception, reasoning, and judgment. (Source:
Alternative or augmentative communication (AAC) – the use of any device,
technique, symbol system, or combination thereof to supplement, enhance, or increase
a person‘s communication abilities.

                                        DRAFT April 2008

Common Communication Options
Sign language – use of signs alone or paired with speech.
Picture Exchange Communication System (PECS) – involves using picture symbols
to communicate wants/needs, label, and so on. The child goes through a learning
process that teaches initiation of communication and then expands to the use of
sentences. Many children who use PECS develop some verbal skills and may graduate
to speech as the primary form of communication.
Communication boards – can be made with pictures or objects that the child points to
or removes from the board to communicate wants/needs.
Other communication devices – a wide range of devices designed to enable the user
to create longer messages. These devices can also act as a universal remote, allowing
the user to operate electronic devices in the environment such as the TV, lights, and so
on. The speech-language therapist can assess the child‘s abilities to use high-tech
devices and make recommendations about the type of device that is best suited for the
child‘s individual needs.
Facilitation – involves holding the child‘s hand or having the child hold the facilitator‘s
hand to help her write or keyboard messages.
Total communication – communication system that pairs simultaneous production of
speech with manual signs or another augmentative devices or symbol systems. The
child is encouraged to use the words/phrases that he is capable of producing and
supplementing communication with signs, symbols, and so on, for what he cannot
communicate verbally.

American Speech-Language-Hearing Association:
Kentucky Speech Language Hearing Association:

Physical Therapy
Physical therapists (PT) are specialists in sensorimotor development, muscle and joint
function, posture, balance and coordination, and gait and functional mobility. They are
knowledgeable about orthotic and prosthetic devices, and assistive technology. Physical
therapists identify movement problems and determine what is interfering with a child‘s
ability to develop age-appropriate gross-motor skills.
Physical therapists help young children with autism learn to walk, run, jump, ride a
tricycle, and catch a ball. They assist preschoolers and school-aged children in
becoming safe in their environments, walking up and down stairs, and climbing, and
help children acquire the gross-motor skills necessary to play on the playground or
participate in physical education classes with their peers.

                                         DRAFT April 2008

Physical therapy may work closely with occupational therapy, sensory integration and/or
speech therapy to help maximize the effects of each therapy.

American Physical Therapy Association:
Kentucky Physical Therapy Association:

Occupational Therapy
Occupational therapy (OT) is concerned with an individual‘s ability to participate in
desired daily life tasks, or ―occupations,‖ that give life meaning. If a person‘s ability to
perform life tasks is impacted by an illness, disease, and/or disability, occupational
therapy can be important.
Performance areas include:
      Activities of daily living (grooming, oral hygiene, toilet hygiene, dressing – as
       related to school performance), feeding and eating, socialization, functional
       communication, and functional mobility;
      Work and productive activities (educational and vocational activities) and home
       management such as meal preparation, shopping, or clothing care; and
      Play or leisure activities (play or leisure exploration and play or leisure
Following an evaluation of the child‘s functioning, OT intervention is targeted towards
those areas that are interfering with the child‘s ability to function. Tasks that may be
targeted include writing, improving hand-eye coordination, buttoning a shirt, tying one‘s
shoes, getting dressed, and feeding oneself. OT intervention with persons with autism
often includes a sensory-integrative approach, which focuses on providing controlled
sensory input during specific activities (see next section on Sensory Integration).
School-based occupational therapy is focused on educationally relevant goals and tied
to curriculum standards. In order for school-based therapy to be effective, a consultative
approach is necessary. Therapy may encompass the more traditional ―pull-out‖/direct
service approach, working with the student within the classroom, consulting with the
parent, student and educational team to ensure that interventions and accommodations
(in the home as well as in the classroom) are effective.
Areas addressed by occupational therapy may include the following.

Fine-motor control/written output – The OT may implement a fine-motor
strengthening and coordination program, and/or recommend adaptations (i.e., use of
pencil grips, specially lined paper, use of keyboard, extended time, shortened work load,
use of note-taker or adapted software programs).

Visual-motor and visual-perceptual skills – Occupational therapists may also
address the student‘s ability to control eye movements to smoothly shift visual focus,

                                       DRAFT April 2008

track objects across midline, and perform the visual motor control needed to read text
as well as write. Accommodations may include slant boards, copy of all work on
chalkboard available at desk, paper window guided, and colored transparencies.

Postural stability and control – Occupational therapists may address difficulties
students may have in maintaining efficient seating postures. Recommendations may
include dynamic seating using a partially inflated beach ball or camping pillow, or a
Move n‘ Sit Cushion.

Sensory Processing
A. Jean Ayres, Ph.D., an occupational therapist, first researched and described the
theories and frame of reference that we now call sensory integration. Briefly, sensory
integration is a process used by the brain to locate, sort, and make sense out of
incoming sensory information. This process is important to successfully accomplish life
Ayres described sensory integrative dysfunction as a sort of ―traffic jam‖ in the brain.
Some bits of sensory information get ―tied up in traffic‖ and certain parts of the brain do
not get the sensory information they need to do their jobs. Children who have ASD may
experience this.

                                       DRAFT April 2008

For example, a child may scream when wearing certain clothing because her sensory
system is hypersensitive to the sense of touch. This same child may crave bear hugs
(deep touch) because her proprioceptive system is hyposensitive. (See Proprioception
below.) These hypersensitive and hyposensitive sensations impact the child‘s
independent functioning in many facets of life, including peer interaction, attention at
school, and activities of daily living at home.
                 Proprioception (sensation from joints, muscles and tissues that lead
                 to body awareness), obtained by lifting, pushing and pulling heavy
                 objects as well as engaging in activities that compress (push together)
                 or distract (pull apart) the joints. It is the sense that allows a person to
                 guide his arm or leg movements without having to observe the
                 movement to make sure it is happening.
                 Vestibular (the sense of movement, centered in the inner ear),
                 obtained by spinning and swinging and, to a lesser extent, any type of
                 body movement or change in head position. It coordinates the
                 movement of one‘s eyes, head, and body and tells the body where it is
                 in space. The vestibular sense is central in maintaining muscle tone,
                 coordinating two sides of the body, and holding the head upright
                 against gravity.
                 Tactile (sense of touch) obtained by providing a variety of input from
                 textures, temperature, and pressure.
                 Auditory (what we hear and closely connected with the vestibular
                 sense), obtained by listening to various types of music or natural
                 sounds. Some auditory input can have an organizing and calming
                 effect. Music containing 60 beats per minute can be particularly
                 organizing, whereas irregular beats and contrasts in volume may be
                 Visual (what we see), can be used to calm or alert the system. Care
                 must be taken that the child‘s environment is not too visually
                 stimulating or distracting.
                 Olfactory (smell) input can stimulate, calm, or send a child into
                 sensory overload.
                 Taste, obtained by the use of sweet, salty, crunchy, or chewy foods,
                 can help calm, alert, or organize the system.
*Sensory Gang used with permission from the Autism Asperger Publishing Company;

Sensory Diet
Once the child‘s sensory processing abilities and needs have been evaluated, the
therapist may work with the educational team as well as the family to develop a sensory

                                       DRAFT April 2008

diet, a term coined by Patricia Wilbarger, OT. The sensory diet is a carefully designed
personalized activity schedule that provides the sensory input a person‘s nervous
system needs to stay focused and organized throughout the day. Because sensory
needs vary from individual to individual and from day to day, careful monitoring and
collaboration is crucial.
Components of a sensory diet might include brushing, swinging, heavy work (lifting,
carrying), swimming, wearing weighted vests, wrist or ankle weights, wearing
earphones, tactile play, trampoline jumping, chewing hard or crunchy objects, among
many others.
Occupational therapists may also elect to use a system of tactile and proprioceptive
input called the Wilbarger Protocol. This is a system using a soft bristle brush to provide
carefully controlled sensory input, always followed by a deep pressure/joint
compression system. While this protocol has been anecdotally reported to be effective
in regulating sensory processing for some individuals, if done incorrectly, it can have
harmful or dangerous results. Therefore, this procedure should only be used by trained
personnel, and under the supervision of a trained occupational therapist.

Cohn, E. S. (2001). Parent perspectives of occupational therapy using a sensory
      integration approach. American Journal of Occupational Therapy, 55, 285-294.
Kranowitz, C. S. (1998). The out-of-sync child. New York: Perigee Book.
Linderman, T. M., & Stewart, K. B. (1999). Sensory integrative-based occupational
      therapy and functional outcomes in young children with pervasive developmental
      disorders: A single subject study. American Journal of Occupational Therapy, 53,
Myles, B. S., Cook, K.T., Miller, N. E., Rinner, L., Robbins, L. A. (2000). Asperger
      Syndrome and sensory issues: Practical solutions for making sense of the world.
      Shawnee Mission, KS: Autism Asperger Publishing Company.

                                       DRAFT April 2008

VandenBerg, N. L. (2001). The use of a weighted vest to increase on-task behavior in
     children with attention difficulties. American Journal of Occupational Therapy, 55,
A more extensive version of this explanation of OT services is available at these
Action Based Learning:
The American Occupational Therapy Association:
Brain Gym:
Junction of OT Function:
The Kid Foundation:
Occupational Therapy and Autistic Children:
Occupational Therapy Innovations:
The Kentucky Occupational Therapy Association:
OT Exchange:
SI Focus magazine:

Vision Therapy
Some children with ASD experience difficulties related to visual-perceptual problems, or
the means by which a person becomes aware of his body‘s relationship to external
space, or the relationship in space between one object and another (Kranowitz, 1998).
Vision therapy is a process of retraining the visual-perceptual system so it functions with
optimal efficiency. The process follows a sequence of steps aimed at improving the
visual system. Therefore, it is a procedure with therapy activities prescribed by the
vision therapist which are carried out in the office, and frequently reinforced with home

                                      DRAFT April 2008

Kranowitz, C. S. (1998). The out-of-sync child: Recognizing and coping with sensory
     integration dysfunction. New York: Perigree.
Optometrists Network:

Recreational Therapies
Recreational therapy is a general term used to describe the practice of using leisure
activities as therapeutic interventions. Such therapies provide opportunities for
supporting and enhancing communication and social and motor activities, and may
include, but are not limited to, the following.

Aquatic Therapy
Aquatic therapy is the use of water and specifically designed activities to help restore,
maintain, and increase function. Aquatic/swimming therapy focuses on therapeutic play
activities that improve range of motion and increase balance, endurance, and body
awareness. Swimming provides movement that can help enhance motor planning.
Water pressure can be soothing and calming for individuals with ASD.

Aquatic Resources Network:
Aquatic Therapy and Rehabilitation Institute:

Art Therapy
Art therapy is an established profession that uses the creative process of art to improve
and enhance the physical, mental, and emotional well-being of individuals of all ages. It
can increase fine-motor, visual motor, visual perception skills, organization, planning,
and artistic expression.

American Art Therapy Association, Inc.:
Art Therapy Credentials Board:

                                       DRAFT April 2008

Music Therapy
Music therapy is the prescribed use of music and musical interventions to work towards
specific therapeutic goals and objectives. Goal areas include communication, academic,
motor, emotional, and social skills. Music therapy can also have a positive effect on self-
esteem and reduce anxiety while developing appropriate expression of emotions.
Music is a nonverbal form of communication. It is a natural reinforcer – it is immediate in
time and provides motivation for practicing nonmusical skills. Parallel music activities
are designed to support the objectives of the child as observed by the therapist or as
indicated by a parent, teacher, or other professional. A music therapist might observe
the child‘s need to socially interact with others. Musical games like passing a ball back
and forth to music or playing sticks and cymbals with another person might be used to
foster such interaction. Eye contact might be encouraged with imitating clapping games
near the eyes. Preferred music may be used contingently for a wide variety of
cooperative social behaviors like staying in a chair or remaining with a group of children
in a circle.

American Music Therapy Association, Inc.:
Center for the Study of Autism:

Therapeutic Horseback Riding
Hippotherapy, or therapeutic horseback riding, uses horses as a source of treatment to
improve balance, posture, and mobility. It can also improve the cognitive, behavioral,
and communication functions of individuals of all ages. Riding enables an individual to
participate in an enjoyable activity while increasing attention span, independence, and
self-esteem. While learning from the horse, riders often bond with the horse as well as
the other riders, thus providing a good foundation on which to build relationships with

American Hippotherapy Association:
North American Riding Association, Inc.:

                                        DRAFT April 2008

Other possibilities for recreational therapies include tumbling/dance, camping, 4H,
animal therapy, peer play groups, community sports activities, swimming/aquatics, yoga,
martial arts, and tae kwon do.
When deciding on recreational therapies, the child’s needs and interests must be

Program Models
Applied Behavior Analysis
Applied behavior analysis (ABA) is the scientific study of the principles of human
behavior. The Florida Department of Children and Families defines ABA as:
The design, implementation, and evaluation of systematic environmental modifications
for the purpose of producing socially significant improvements in and understanding of
human behavior based on the principles of behavior identified through the experimental
analysis of behavior. (
ABA includes finding out the connection between an individual‘s behavior and his/her
environment. In other words, what is causing the behavior? ABA uses direct observation
and measurement of behavior and environment. Measurement looks at how often, what
time, how long, to whom, or how intense a behavior occurs. ABA also looks at what
happens in or to the environment right before a behavior occurs, otherwise known as
the antecedent behavior. Antecedent behavior includes verbal, gestural or physical
prompts, cues, materials, language, and environmental factors (sensory input: noise,
light, smell, taste, touch), either naturally occurring or intentionally manipulated to affect
a behavior. The consequence of the behavior is what occurs after the behavior.
Consequences include reinforcement, both positive and negative, and punishment.
Reinforcement increases the likelihood of the behavior occurring again. Punishment
procedures increase the likelihood of the behavior diminishing or disappearing (known
as extinction). The sequence of ABA is sometimes referred to as ABC: antecedent,
behavior, consequence.
A substantial amount of research has shown that ABA can be effective for children with

Association for Behavior Analysis International:
Clinical Behavior Analysts:
Cooper, J., Heron, T. E., & Heward, W. L. (2006). Applied behavior analysis (2nd ed.).
     New York: Macmillan.

                                       DRAFT April 2008

Discrete Trial Training
ABA is not synonymous with discrete trial training (DTT), although many erroneously
use the terms interchangeably. DTT is an ABA strategy. DTT is a distinct and complete
behavioral event that includes a discriminative stimulus or the antecedent (what
happens before the behavior), the response or behavior (what the child is required to
do), and the consequence for the behavior (reinforcement). The term ―Lovaas Therapy‖
comes from Dr. O. Ivar Lovaas, whose landmark research led to the application of DTT
techniques to teach children with autism.

Association for Behavior Analysis International:
Harris, S. L., & Weiss, M. J. (1998). Right from the start: Behavioral intervention for
       young children with autism: A guide for parents and professionals. Bethesda,
       MD: Woodbine House.
The Lovaas Institute for Early Intervention:
Wisconsin Early Autism Project:

Verbal Behavior (VB) Intervention
Also called applied verbal behavior, this is a type of ABA that is based on B. F.
Skinner‘s 1957 analysis of verbal behavior. Like the Lovaas model, VB emphasizes the
importance of using very structured and organized learning environments, including
readily accessible reinforcers delivered after a correct response. The model teaches
both speaker and listener behavior. The VB format uses discrete trial instruction as well
as natural environment training (NET), a practice that differentiates itself from the
Lovaas model. The NET supports the generalization of responses in different settings
and different stimulus conditions.
The VB model focuses on teaching the functions of language. This includes teaching
children the many uses of language such as requesting, labeling, speech imitation,
describing, categorizing, reading and commenting. (Skinner used the words mand, tact,
echoic, and intraverbal to describe these functions.) VB begins with teaching ―mands,‖
which are commands, demands, requests; then ―what do you want?‖ to elicit language;
moving on to echoic, receptive, ―tacting‖ (labeling objects); then receptive language by
function (―what does it do?‖), feature (―what does it look like or what are
characteristics?‖), and class (category); and finally ―intraverbals,‖ both simple and
complicated, which are word ―associations.‖
Partington and Sundberg (2005) developed the Assessment of Basic Language and
Learning Skills – Revised (ABLLS-R). The ABLLS-R is an assessment, curriculum guide,
and skills tracking system for children with autism or other developmental disorders
based on Sundberg‘s and Partington‘s (1998) book, Teaching Language to Children
with Autism and Other Developmental Delays. The ABLLS assesses a child‘s skills and
deficits to establish a baseline for programming. The curriculum guide uses task

                                       DRAFT April 2008

analysis to teach the skills needed for speaking and listening. It also includes scoring
instructions and a skills tracking system.

B. F. Skinner Foundation:
Dr. Vincent J. Carbone:
Partington, J. W., & Sundberg, M. L. (1998). Teaching language to children with autism
       and other developmental delays. Pleasant Hill, CA: Behavior Analysts, Inc.
Partington, J. W., & Sundberg, M. L. (2005). The Assessment of Basic Language and
       Learning Skills – Revised (ABLLS-R). Pleasant Hill, CA: Behavior Analysts, Inc.

Pivotal Response Training (PRT)
PRT is a comprehensive service delivery model that uses both a developmental
approach and applied behavior analysis (ABA) procedures. PRT aims to provide
opportunities for learning within the context of the child‘s natural environments (Koegel
& Koegel, 2005).
       PRT was designed based on a series of studies identifying important treatment
       components. It includes clear and appropriate prompts, child choice, turn taking,
       maintenance tasks, reinforcing attempts, responding to multiple cues, and a
       direct response-reinforcer relationship. PRT does not define the specific types of
       prompts to use: however, implementation of the procedure usually involves the
       same prompting strategies as those used in milieu teaching and interrupted
       behavior chains. In contrast to the other procedures that have focused almost
       exclusively on increasing verbal and nonverbal communications, PRT has been
       adapted to teach a variety of skills including symbolic and sociodramatic play and
       joint attention. (Schreibman & Ingersoll, 2005, p. 884)

Koegel, R., & Koegel, L. (2005). Pivotal response treatments for autism: Communication,
     social, and academic development. Baltimore: Paul H. Brookes.
Schreibman, L., & Ingersoll, B. (2005). Behavioral interventions to promote learning in
      individuals with autism In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.),
      Handbook of autism and pervasive developmental disorders: Volume II:
      Assessment, interventions, and policy (pp. 882-896). New York: John Wiley.

Developed in the early 1970s by Eric Schopler, the TEACCH (Treatment and Education
of Autistic and Related Communication Handicapped Children) approach focuses on the
person with autism and designing a program around her skills, interests, and needs.
Thus, the individual, rather than the instructional method, is the priority.

                                        DRAFT April 2008

The program uses structured teaching in a variety of settings. Organizing the physical
environment, developing schedules and work systems, making expectations clear and
explicit, and using visual materials have been found to be effective ways of developing
skills and allowing people with ASD to use these skills independently of direct adult
prompting and cueing.
Cultivating strengths and interests, rather than drilling solely on deficits, is another
important priority. The relative strengths of those with autism in visual skills, recognizing
details, and memory, among other areas, can become the basis of successful adult
functioning (Mesibov & Shea, 2006).

Division TEACCH:
Mesibov, G. B., & Shea, V. (in prep.). Evidence-based practice, autism, and the
      TEACCH program.

The Hanen Approach
The Hanen Centre based in Montreal, Canada, supports the belief that parents can be
their child‘s language facilitators. Since parents have the strongest bond with their
children and also have multiple opportunities to interact with their children on a daily
basis, parents are the obvious choice for language facilitators. Parents involved in the
program are trained by Hanen-certified speech-language pathologists. Through training,
parents learn how to adapt the Hanen approach to meet the needs of their own child.
There are three programs for parents:
    • It Takes Two to Talk – The Hanen program for parents.
    • More Than Words – The Hanen Program for Parents of Children with ASD
    • Target Word – The Hanen Program for Parents of Children who are Late Talkers.
In order to support special educators, the Hanen Centre has developed special
materials for teachers, including Learning Language and Loving It – A Guide to
Promoting Children’s Social, Language, and Literacy Development (2nd ed.) (Weitzman
& Greenber, 2002).
The Hanen approach puts parents and others who work with young children in the
forefront as language facilitators. The child is recognized as having the most important
role in the learning process and experiences provided by adults are the learning

Weitzman, E., & Greenber J. (2002). Learning language and loving it: A guide to
      promoting children’s social, language, and literacy development (2nd ed.). Toronto,
      Canada: Hanen Centre.

Integrated Play Groups

                                       DRAFT April 2008

The concept of Integrated Play Groups was developed by Pamela J. Wolfberg, Ph.D.
Based on the nature of play among peers without disabilities, Dr. Wolfberg established
a format that promotes socialization and imagination in children with autism and other
developmental delays. Integrated Play Groups follow rules for creating an appropriate
play environment, including play areas and selected materials; preparing the typical
peers for play; use of assessments and measurements of progress; as well as play
guidance. Integrated Play Groups focus on social communication, especially in the
autistic deficit areas of imitation, joint attention, and imaginative and creative play.

Wolfberg, P. J. (2003). Peer play and the autism spectrum: The art of guiding children‘s
      socialization and imagination. Shawnee Mission, KS: Autism Asperger Publishing

SCERTS stands for Social Communication, Emotional Regulation, and Transactional
Support. The SCERTS Model™ is a comprehensive model that is based on a
developmental perspective and was designed to support individuals with ASD. The
SCERTS ModelTM is interdisciplinary in its approach, in that it addresses social
communication and emotional regulation throughout the child‘s daily activities and
routines, and guides and supports parents and caregivers through a multidisciplinary
team effort. The model uses the knowledge base and experience of general and special
educators, speech language pathologists, occupational therapists, child psychologists,
psychiatrists, and social workers.
The SCERTS Model™ is not prescriptive, nor is it a curriculum. Instead, it is based on
fundamental beliefs and values that address the core deficits of ASD. The model is
systematic, semi-structured, but flexible, so that the individual goals of the family and
child with ASD can be addressed at specific developmental levels. The model is based
on the belief that children learn best when they are emotionally regulated and can
communicate within a social context. The SCERTS Model™ was systematically
developed to be implemented based on those beliefs. It is does not exclude other
educational models, but accepts them within its framework of intervention as

Prizant, B., Wetherby, A., Rubin, E., Laurent, A., & Rydell, P. (2006). The SCERTS
       model™: A comprehensive educational approach for children with autism
       spectrum disorders. Baltimore: Brookes.

Relationship Development Intervention (RDI)
Relationship Development Intervention, created by Steven Gutstein, Ph.D., is modeled
on how typical children become competent in the world of emotional relationships. It is
an intervention approach quite different from the typical social skills programs currently

                                        DRAFT April 2008

RDI uses assessment information to develop clear, specific, developmentally
appropriate treatment objectives and customized activities. The RDI curriculum is
composed of six levels, each representing a dramatic developmental shift in the central
focus of relationships. The six levels are: Novice, Apprentice, Challenger, Voyager,
Explorer, and Partner. RDI provides a path for people on the autism spectrum to learn
friendship, empathy, and a love of sharing their world with others. Language comes
alive when integrated with real emotion. People with ASD learn not only to tolerate but
to enjoy change, transition, and going with the flow. The path begins at the edge of each
person‘s current capability and carefully, systematically teaches the skills needed for
competence and fulfillment in a complex world.

Connections Center:

Dr. Stanley Greenspan and his colleague Serena Weider created the Developmental-
Individual Differences-Relationship (D.I.R.)-based model as an intervention for children
with autism and other developmental delays.
Greenspan and Weider (1998) specify six functional milestones of development in this
order: self-regulation and interest in the world, intimacy, two-way communication,
complex communication, emotional ideas, and emotional thinking. According to the
authors, these milestones lay a foundation for more advanced learning since they are
based upon emotional interactions usually developed early in life.
The D.I.R. model uses a comprehensive evaluation, including developmental history,
biomedical assessment, current functioning, child-caregiver interactions, auditory
processing, sensory processing, sensory modulation, motor and perceptual motor
functioning, and family patterns, to develop a comprehensive intervention plan for the
child and family. The primary goal of the D.I.R.-based intervention is to enable children
to form a sense of themselves as intentional, interactive individuals and to develop
cognitive language and social capabilities from this basic sense of intentionally.
Part of the D.I.R. method uses ―floortime,‖ which is an intensive, one-to-one experience
during a 20- to 30-minute period when a caregiver physically gets down on the floor and
interacts with the child. The focus is on relationships, based on Greenspan and
Weider‘s belief that the more intellectual functions of the brain do not develop without a
constant source of relating. During floortime, the adult follows the child‘s interest or
intent, even if the interest is a self-regulatory behavior, in order to encourage interaction.
For example, if the child spins the wheels on a car, the adult may help him or spin a
different wheel. The adult may limit the number of toys

                                        DRAFT April 2008

available so that the child has to interact to get more toys. The goal is not just to follow
the lead of the child but to help the child expand his interactions. According to the
authors, the four goals of floortime are two-way communication, logical thought,
attention and intimacy, and the expression and use of feelings and ideas.

Floortime/DIR Model:
Greenspan, S., & Weider, S. (1998). The child with special needs. Reading, MA:

Individual Strategies
The following table identifies individual strategies that have been found effective in
supporting individuals with ASD. These strategies can be effective in a variety of
settings, such as home, community, and educational settings. The name of each
strategy is listed in the first column, followed by an explanation and description of the
strategy in the second column. The last column lists where to find more information on
the strategy.

                                                                                DRAFT April 2008

                                      Strategies Found Effective in Supporting Individuals with ASD

   Strategy                            Description                                                                 Resources
                 Created by Carol Gray, a Social StoryTM is a short
                 story written from the child‘s perspective to
                                                                          Carol Gray offers information on how to write Social Stories ™ as well as other related
                 encourage appropriate behavior in a particular
                                                                          information on her website:
                 situation. The story includes a description of the
                 situation, a positive statement of what the child will
                 do (that is, the appropriate behavior the story is
Social                                                                    Additional information may be found at
                 written to encourage), and how others react to the
                 situation. The final sentence in the story is added
                 with the child after reading the story. It offers a
                 connection to something the child knows, or              In addition, the book The New Social Story Book by Carol Gray is available in the OCALI
                 another strategy to help her remember the                Lending Library.
                 appropriate behavior. Depending on the individual,
                 Social StoriesTM may include pictures.
                 Video modeling is the use of videos of someone
                 behaving appropriately in a given situation to model
                 appropriate behavior for a child. While the video        These websites offer information on video modeling:
Video modeling   can be of the child behaving appropriately in his and
                 own environment, the technique is also effective if
                 someone else, a complete stranger, exhibits the
                 behavior in a different environment.

                                                                          A practical manual on priming may be accessed from
                 Priming is a way of letting a child know what to, and
                 expect or what is coming. You can prime for a short
                 or a long period of time. For example, you may
                 prime a child for a Saturday shopping trip by going
                 over where you will go, when you will go, how long
                 you will be there, and the things you need to
Priming          accomplish at each place. You may also identify          The following books offer explanations and ideas for using priming:
                 what behavior is expected for each stop. Typically,
                 you would put the same information in a visual           • Children and Youth with Asperger Syndrome: Strategies for Success in Inclusive
                 format to cue the child throughout the trip. For
                 example, you may have a visual schedule for the          • Settings by Brenda Smith Myles
                 day that you look at with the child as you discuss
                 the day.                                                 Finding Our Way by Kristi Sakai

                                                                          Both books are available in the OCALI Lending Library.

                 The 5-point scale is a technique used to help a
                                                                          More information about this technique, which was developed by Kari Dunn Buron and Mitzi
5-Point Scale    child break down an abstract concept into a visual
                                                                          Curtis, may be found at
                 system that is easier to understand. For example, a

                                                                                  DRAFT April 2008

                  concept such as using appropriate voice volume
                  can be broken down into a 5-point scale, with 1=no
                  voice, 2=whisper, 3=normal voice/dinnertime,
                  4=loud voice/playing outside, and 5=screaming. A
                  visual representation of the scale is used as the
                  scale is introduced and explained tothe child. It is
                  reviewed repeatedly so it becomes very familiar. A
                  picture of the scale is later used as a visual support    The books The Incredible 5-Point Scale by Kari Dunn Buron and Mitza Curtis and When My
                  to remind the child to use an appropriate voice           Worries Get Too Big! by Kari Dunn Buron are both available in the OCALI Lending Library.
                  level. The teacher points first to the level the
                  student is using, and then slides her finger down to
                  the appropriate level for a given situation. For
                  example, if the child was screaming while the family
                  was in the store, the parent would point to number
                  5, then move her finger down to 3 – an acceptable
                  The Power Card, developed by Elisa Gagnon, is a
                  strategy to teach a child appropriate behavior for a presents additional information on the
                  particular situation. The Power Card strategy relies      Power Card strategy.
                  on the power of a child‘s special interest. It includes
                  a story in which the person or object of special
Power Cards       interest behaves appropriately in a situation in
                  which the child is having difficulty. The child is        Elisa Gagnon‘s book Power Cards: Using Special Interests to Motivate Children and Youth
                  given a small card, which includes approximately          with Asperger Syndrome and Autism is available in the OCALI Lending Library.
                  three points to guide appropriate behavior, along
                  with a picture or some visual reference to the
                  person or special interest to cue the child.

                                                                            The following websites provide information on visual supports:
                  For individuals with ASD visual learning is generally
                  a strength. Therefore, it is often helpful to present
Visual            information in some visual form in place of, or in
strategies        addition to, verbal information or directions. There      visualsupports.shtml
(First ... Then   are a number of visual strategies, including first-
Board, Visual     then cards, visual schedules, visual lists,
Schedule)         prompt/cue cards. In addition, many other                 The following helpful books, Visual Strategies for Improving Communication by Linda
                  strategies include visual strategies, such as Power       Hodgdon and Do-Watch-Listen-Say by Kathleen Quill, and books and videos on the specific
                  Cards and the 5-point scale.                              visual support listed, are available from the OCALI Lending Library.

Social            Social interpretation strategies are an important
                                                                            The website offers information on these strategies.
Interpretation    element of social skills instruction. Strategies

                                                                           DRAFT April 2008

Strategies   involve systematically breaking down hypothetical
             or past social experiences of the child in a visual
             manner. An adult facilitates this breakdown, and
                                                                     More information on social interpretations strategies may also be found in Do-Watch-Listen-
             then discusses other choices the child could make
                                                                     Say by Kathleen Quill, and Children and Youth with Asperger Syndrome: Strategies for
             in a similar situation, as well as the consequences
                                                                     Success in Inclusive Settings by Brenda Smith Myles, which are available from the OCALI
             of different choices. Examples of social
                                                                     Lending Library. In addition, there are other sources detailing the specific strategies listed,
             interpretation strategies include: social autopsies,
                                                                     including The Way to A by Hunter Manesco.
             Situation Options Consequences Choices
             Strategies Simulation (SOCCSS), cartooning, and
             flowcharts (i.e., The Way To A).
             For many individuals with ASD, the world, in   describes the home base strategy and how it can be used for children
             particular the school environment, can cause a          and youth with ASD.
             great deal of anxiety. In such cases, a Home Base
             may be assigned. The Home Base is a place where
             the child feels comfortable and can relax. The child
Home Base                                                            The book Children and Youth with Asperger Syndrome: Strategies for Success in Inclusive
             is always allowed to leave her current setting and
             go to Home Base when she feels her anxiety level        Settings by Brenda Smith Myles explains Home Base and is available from the OCALI
             rising. A self-calming technique, this strategy         Lending Library.
             recognizes that a child may have to remove herself
             from an environment in order to calm down.
                                                                     Graphic organizers can be found at the following websites:

             Graphic organizers are visual ways to organize
             information or materials. These can range from
             idea webs and Venn diagrams to color-coding
             folders and books for each school subject. Graphic
             organizers can be effective tools for helping a child
             organize the environment, as well as organize           There is also information in the book Children and Youth with Asperger Syndrome: Strategies
             information to enable learning.                         for Success in Inclusive Settings by Brenda Smith Myles, which is available from the OCALI
                                                                     Lending Library.

                                      DRAFT April 2008

Biomedical Interventions
A variety of medications have been prescribed for individuals with ASD, and several
have been researched. However, no one medication works for every person with ASD.
Hyperactivity, sleep problems, obsessive tendencies, anxiety, aggression, and self-
injury are some of the symptoms that may be targeted with specific medications.
When medication is being discussed or prescribed, it is important to ask:

        What is the safety of its use in children with autism?
        What is the appropriate dosage?
        How is it administered (pills, liquid)?
        What are the long-term consequences?
        Are there possible side effects?
        How will my child be monitored and by whom?
        What laboratory tests are required before starting the drug and during
        Are there possible interactions with other drugs, vitamins, or foods?
Given the complexity of medications, drug interactions, and the unpredictability of how
each patient may react to a particular drug, parents should seek out and work with a
medical doctor with expertise in the area of medication management.
Medications should be given on a trial basis with close monitoring of positive and
negative effects. Since there are few objective measures of a person‘s response to a
medication, reliance on subjective information (parent, teacher, and caregiver reports) is
common. This is particularly important for children with ASD, who have difficulty
understanding and expressing feedback from their bodies and their emotions. The
observations of parents and caregivers should be systematically collected by logs,
charts, scales, or other accepted behavioral documentation. Occasionally, a trial of
medication tapering and discontinuation is a way to determine its efficacy and/or
whether it is still needed. Like any medical treatments, medications should be reviewed
at every follow-up visit.

Autism Society of America:

                                       DRAFT April 2008

Nutritional and Dietary Interventions
Individuals with autism may exhibit low tolerance or allergies to certain foods or
chemicals. While not a specific cause of autism, food intolerances or allergies may
contribute to behavioral issues. Nutritional therapies may be used for a variety of
reasons. Some parents and professionals have reported changes when specific
substances are eliminated from the child‘s diet.

   Parents wishing to pursue dietary interventions should consult a
   gastroenterologist or nutritionist who can help ensure proper nutrition.
   Be sure to consult with a doctor, nutritionist, or dietician before beginning any
   dietary or nutritional supplement interventions.

The Gluten-Free/Casein-Free Diet (GFCF)
According to theory, some individuals are unable to completely digest the protein in
cereals (gluten) or in dairy products (casein). The molecular structure of the partially
undigested proteins, known as peptides, resembles opiates. Such peptides are thought
to have an effect much like opiates on the brain and nervous system. From this premise
it follows that long-term exposure to these peptides can have damaging effects on the
developing brain and can also affect behavior, just as any narcotic would.
Beginning a GFCF diet can be difficult but not impossible. Gluten is most commonly
found in wheat, rye, and barley, and sometimes contaminates oats grown nearby or
processed on the same equipment as gluten-containing cereals. Casein is found in
dairy products. Wheat and dairy make up a large proportion of the Western diet. One of
the biggest obstacles parents face is that children needing GFCF diets often crave
these foods. In fact, parents often report withdrawal symptoms when gluten and casein
are eliminated from their child‘s diet.
Although there are reports of immediate improvement, it may take as long as six months
for gluten and one month for casein to clear out of the system. Advocates of the diet
recommend trying it for at least a year as it can take that long for some children to show
improvement. The diet affects changes in the body at a cellular level and promotes
healing of the stomach and intestinal lining, both of which can take time.

                                         DRAFT April 2008

   Calcium is very important in bone development and maintenance. Most people
   get their calcium from dairy sources. If your child is on a dairy- or casein-free diet,
   a calcium supplement may be necessary.

Autism Network for Dietary Intervention:
GFCF Diet Support Group:

Feingold Diet
The Feingold diet is a food elimination program developed by Ben F. Feingold, MD, to
treat hyperactivity. The diet is free of artificial colors, artificial flavors, aspartame, three
petroleum-based preservatives, and (on Stage One) certain salicylates. All (except for
the salicylates/phenols) are made of petroleum, and breaking them down into digestible
compounds uses up the PST enzyme, which is the main enzyme for detoxification in the
body. If you remove artificial foods from the diet, people with a marginal amount of
natural PST enzyme (proponents suspect individuals with ASD fall into this group) will
have it available to detoxify the body, including the brain. Salicylates and phenols also
depress the levels of PST enzyme.

Feingold Association:

Specific Carbohydrate Diet
The specific carbohydrate diet (SCD) is a strict grain-free, lactose-free, and sucrose-
free dietary regimen. Initially developed for individuals with celiac disease and other
intestinal disorders, the diet may help individuals with ASD who experience
gastrointestinal problems.
The theory behind this diet is that carbohydrates, being forms of sugar, promote and
fuel the growth of bacteria and yeast in the intestines, causing an imbalance of and
eventual overgrowth of bacteria and yeast. Bacterial overgrowth can prevent the
digestion and absorption of carbohydrates. This causes the carbohydrates to remain
undigested in the intestines, providing

                                        DRAFT April 2008

even more fuel for bacteria and yeast. Toxins and acids can be formed by the bacteria
and yeast and injure the small intestine lining. Excessive mucus may be produced as a
defense mechanism against the irritation caused by toxins, acids, and undigested

Horvath, K. (1999). Gastrointestinal abnormalities in children with autistic disorder.
Journal of Pediatrics, 135, 533-535.

Anti-Yeast Diet
This diet was developed to address the overproduction of or allergies to Candida
albicans, a single-celled yeast that is impossible to keep out of the body. Normally, it
does no harm, because it is kept in check by beneficial bacteria, but if there is an
imbalance in the beneficial bacteria, candida can grow uncontrolled, releasing extremely
acidic toxins into the bloodstream. These chemicals slow the brain down so that it no
longer works correctly. The chemicals should be cleared by the liver so that they never
reach the brain. However, in some, they are apparently not cleared, causing problems.
The anti-yeast diet consists of removing fermented foods from the diet. The worst
offenders are alcoholic beverages and non-alcoholic beer, vinegar, barley malt,
chocolate, pickles, soy sauce, and aged cheese. Some believe that individuals with
ASD are likely to have an allergy to or overproduce Candida albicans.

Nutrition Institute:

Over the past 10 years or more, claims have been made that vitamin and mineral
supplements may improve the symptoms of autism in a natural way.
If you are considering adding vitamins or minerals to your child‘s diet, a laboratory and
clinical assessment of her nutritional status is highly recommended. The most accurate
method for measuring vitamin and mineral levels is a blood test. It is also important to
work with someone knowledgeable about nutritional therapy. While large doses of some
vitamins and minerals may not be harmful, others can be toxic. Once supplements are
chosen, they should be phased in slowly (over several weeks), and the effects should
be observed for one

                                       DRAFT April 2008

to two months. The reported benefits of supplements range from behavioral changes, to
improved language.
Supplements can include the following.

B6 and Magnesium
B6, often combined with magnesium, is reported to help improve language, eye contact,
brain electrical activity, behaviors, and immune system function. Magnesium is needed
with high doses of B6 because, when taken alone, B6 may cause a deficiency in
magnesium and other B vitamins. Also, magnesium may decrease some possible side
effects, such as irritability, bed-wetting, and sensitivity to sound.

Vitamin B12
Vitamin B12 deficiency is characterized by the inability to absorb food. Vitamin B12 is
essential for metabolism of fats and carbohydrates and the synthesis of proteins.
Vitamin B12 is involved in the manufacture of the myelin sheath, a fatty layer that
insulates nerves in the brain.

Dimethylglycine (commonly known as DMG) is classified as a food substance rather
than a vitamin. It is found in very small amounts in brown rice and liver. Parents have
reported positive results with a similar product, tri-methyl-glycine (TMG). TMG breaks
down into DMG and SAMe in the body. SAMe is a nutritional supplement and is
sometimes used to treat mood disorders such as depression. There are, as yet, no
published reports on the efficacy of DMG or TMG for individuals with ASD.

Melatonin is a hormone made by a part of the brain called the pineal gland. Melatonin
may help our bodies know when it is time to go to sleep and when it is time to wake up.
Melatonin supplements come in two pill forms, natural and synthetic (man-made).
Natural melatonin is made from the pineal gland of animals.
Children with ASD often have sleep disturbances, which suggests that there may be
some problem associated with the body‘s production and use of melatonin. Children
receiving melatonin regularly exhibit benefits that cannot be explained in simple terms,
like better sleep. It may be a combination of better sleep and better control of biological
rhythms. Especially in children, melatonin should be given only under the supervision of
the regular physician.

Vitamin A
For years, high doses of this vitamin have been used successfully to treat the measles
virus. Using cod liver oil, Megson (2004) began vitamin A therapy with some of her
patients and observed some positive results. Some patients spoke more frequently and
clearly; others made gains in eye contact. Megson has reported that vitamin A in the
natural form, such as cod liver oil, helps to rebuild areas in the brain, called receptors,
that are dramatically affected by ASD. The natural form of vitamin A is claimed to also
improve cell growth, repair of epithelial cells found in the gut wall, immune system
function, and gene expression and transcription.

                                       DRAFT April 2008

Consult your doctor if you are considering a Vitamin A supplement as too much
vitamin A or D, which is also found in cod liver oil, can be toxic.

Vitamin C
The benefits of vitamin C are widely known in the general public, and it may be of help
for children with autism as well. Vitamin C is an antioxidant that helps the brain utilize
oxygen. Without this vitamin, confusion and depression can develop. Vitamin C can also
help support the immune system, aid in detoxification, and fight viruses and bacteria.
Vitamin C is nontoxic, even in high doses.

Folic Acid
Folic acid is a nontoxic B vitamin, and a nutrient essential to the brain‘s health. It has
been reported as helpful in treating autism. It is widely recommended that pregnant
women take extra folic acid during their pregnancy to help prevent some birth defects. It
is most effective when taken with vitamins B12 and C.
Other supplements can include essential fatty acids, zinc, probiotics, and cod liver oil,
but should be carefully researched and taken only under the supervision of a physician.

Autism Research Institute:
Kirkman Labs:
Megson, M. (2004). Autism and vaccination. Retrieved January 7, 2007, from

Defeat Autism Now! Protocol (DAN)
The Defeat Autism Now!, or DAN, protocol is a guide for clinical assessment of
individuals with autism developed by participants in the DAN conferences organized
originally by the Autism Research Institute. (ARI is the Autism Research Institute, a non-
profit organization, founded in 1967 by Dr. Bernard Rimland. ARI is focused on
conducting research and providing information on ASD to both parents and
Some practitioners who know the DAN! protocol regularly use the medical tests to
assess a child‘s health. There are also practitioners who will be willing to read the DAN!
protocol and implement it. The basic premise of the DAN! protocol is that heavy metal
toxicity in the form of thimerosal in vaccines, amalgams, or some other source, is the
cause of the symptoms of autism. Most also recommend the use of the GFCF diet.

Autism One:
Center for the Study of Autism:
Defeat Autism Now!:

                                      DRAFT April 2008

Generation Rescue:

Chelation therapy is a process involving the use of chelating agents to remove heavy
metals from the body. For the most common forms of heavy metal intoxication, those
involving lead, arsenic or mercury, the standard of care in the United States dictates the
use of DMSA Dimercaptosuccinic acid. This, in addition to other chelating agents such
as DMPS, EDTA, and alpha lipoic acid (ALA), is used. Chelation originally had to be
administered intravenously. Now prescription chelating creams are available that can be
applied to the skin.

   Chelation must be done under the supervision of a doctor familiar with the DAN!
   protocol – it is only part of what should be an interconnected medical-based

See DAN! resources above


                                     DRAFT April 2008

                                   CHAPTER 5

         Educational Services
                    Navigating Through the
                   School System in Kentucky
Through collaboration between parents and schools, excellence is fostered in education
for all students. Hence, cooperative team efforts such as: ARC‘s, informal round table
discussions, daily communications, can help to identify student‘s strength‘s and needs
for effective programming. Areas to consider when planning might be: communication,
social skills, stereo typical/ repetitive behaviors, sensory needs, and academic issues.
Working as a team, we can put the pieces of the ASD puzzle together one piece at a

This chapter describes how a child receives an educational identification of autism to
qualify for special education services under the Individuals with Disabilities Education
Act (IDEA). In addition, it provides an explanation of the Individualized Education
Program (IEP) and offers tips for participating successfully in the ARC meeting,
including suggestions for communicating effectively with school personnel.

                                                            DRAFT April 2008

       School Age

   Pre referral Interventions

                                Teacher Referral

     ARC to Complete                   Determine Assessment
     Written Referral                   Questions
                                       Appropriate Evaluation Plan

Multidisciplinary Team Evaluation
for Education Eligibility Only

ARC to discuss results of                  Determine Eligibility
Psycho educational Evaluation              Develop IEP
                                           Determine Placement

     IEP Implementation

Annual Review of IEP
Progress/ New IEP Developed

Re-evaluation Every 3 Years
(Components Determined by
the ARC)

                             DRAFT April 2008

Early Intervention/                        Referral to School Age
Preschool                                  Services

Early Screen/Evaluation-                        Transition Planning
Medical or Educational                          (which includes: IEP
                                                development and
Develop IFSP-                                   Placement, Training of
Individualized Family                           Professionals, Student
Support Plan                                    Preparation of Changes)

                                                Enter School Age

Referral to Preschool with
transition beginning prior
to student’s 3rd birthday

Determine Educational

Develop IEP, including
determination of related
Determine Placement

Implement IEP, which is
reviewed at least annually

                                        DRAFT April 2008

                                Educational Identification

Under the Individuals with Disabilities Education Act (IDEA), all children with disabilities
have a right to a free and appropriate education. The local school district is responsible
for locating, identifying, and evaluating all children who may be eligible for special
education services from 3 to 21 years of age. This process is called Child Find.

If you are concerned about your child's development and the child is 3
years old or younger, you can contact the First Steps program in your
county, as discussed in Chapter 2. If you are concerned about a child who
is 3 and older, you can request support from your local school district. If
your child is in preschool or kindergarten, request a meeting with your
child's teacher to discuss your concerns. Ask the teacher to observe your
child's performance in social as well as academic situations and compare
those observations with your own.

If your child does not attend school and does not currently have a diagnosis, discuss
your concerns with your pediatrician or contact your local school district. Your school
district is responsible for identifying all children with disabilities. Ask to speak to
someone in the special education department. When you explain your concerns, your
child will be referred for screening to determine if further evaluation is necessary. If your
child is in school and needs help to be successful in the classroom, school personnel
will initiate one of the following to identify the type of support your child needs.

      Assistance Team (AT). This is a group of school personnel who meet to support
       classroom teachers in addressing issues with an individual student, whether they
       are behavioral or educational. The team identifies supports the student may re-
       quire to be successful in the classroom. Parents are included in the AT process
       for their child.

      Student Intervention System (SIS) This is the process of identifying and
       assessing the effectiveness of interventions identified to support a student who is
       experiencing learning difficulties. The interventions will be identified and carried
       out by school personnel.

In both instances, the accommodations and supports are carried out for a specific
length of time while data are being collected on the student's progress. The AT/SIS
team will meet to review the data and then determine whether to continue the
intervention process by adding and/or adapting supports. If the team feels that the
student is not responding to the intervention or showing expected progress, the team
must request a multi disciplinary evaluation.

                                         DRAFT April 2008

The Admissions and Release Committee (ARC)
The ARC team is a group of individuals responsible for making all decisions about the
identification, evaluation, placement of a child, and the provision of FAPE. The ARC
team can also be called the IEP team. The ARC team consists of the following people:

    You as the parents
    The child, if appropriate
    The child‘s general education teacher
    The child‘s special education teacher
    A school district representative who is qualified to provide or supervise the
     specially designed instruction, is knowledgable about the general education
     curriculum, and can commit resources (i.e., school principal)
    A person who can interpret test results and how the results may impact
    Related service personnel (Speech/language pathologist, Occupational
    If the child is being served in early intervention programs, a representative from
     the preschool program.

Identification, Evaluation, and Placement Process

Federal and state laws and regulations have specific steps to make sure the rights of
children with disabilities are protected. These rights include making sure that you have
a chance to work as part of a team with the school district in making decisions about
your child‘s education.

The following steps are carried out in the process of identification, evaluation,
placement and provision of FAPE:

   1.   Referral
   2.   Evaluation
   3.   Eligibility
   4.   Development of the IEP
   5.   Placement
   6.   Implementation
   7.   Program Review


When parents, school staff, or other individuals think that a child might have a disability
and need special education services, they give that information to the office of the
Special Education Director. This is known as a referral.

If your child is referred for special educations services, you will be notified in writing, you
will be invited to attend an Admissions and Release Committee (ARC) meeting and will
be asked for permission to evaluate your child.

                                         DRAFT April 2008


In order to best serve the needs of your child the ARC team uses the information from
the full and individual evaluations to decide if you child has a particular type of disability,
how your child is currently doing in school and whether your child may need special
education and related services.

      The school collects information about your child from many different people and
       in many different ways. The evaluation process includes:
      Your child‘s educational history
      The observations and opinions of professionals who have worked with your child.
      Your child‘s medical history when is related to their performance in school
      Psychological evaluations
      Your knowledge of your child in relationship to his/her school experiences,
       abilities, strengths, challenges, and behavior outside of school.

      The evaluation process involves several tasks:
      Reviewing existing information
      Deciding if more information is still needed
      Collecting more information about your child

Once you have given your written consent for your child to be individually evaluated,
qualified professionals will be chosen to help evaluate your child's abilities and needs.
Professionals will observe your child. They may give your child written tests or talk
personally with your child. They are trying to get a picture of the "whole child."

In most cases, your school district will be able to conduct your child's entire evaluation
within the school district. In a few cases, a school district may not have the staff to do
all of the evaluations needed. These districts will have to hire or contract with outside
people or agencies to do some or all of the evaluation. If your child is evaluated outside
the school, the school must make the arrangements at no cost to you. The school will
tell you in writing exactly what type of testing is to be done. Evaluations done at the
recommendation of the ARC are done at no cost to parents.

Completed evaluation. The total amount of time from the date the school receives your
written consent to evaluate your child until the date the individual education program is
started cannot exceed sixty (60) school days. When the evaluation is completed, you
will receive written notice of an ARC meeting to discuss the results of the evaluation.
As a member of the ARC, you and other members of the ARC should have access to
the evaluation information to be used for making educational decisions prior to the ARC
meeting. Ask to obtain your copy of the evaluation report before the ARC meeting. You
have the right to have the results of your child's evaluation explained to you. You may
ask any questions you have about the results in order for you to fully understand the
results and help make decisions for your child.

                                       DRAFT April 2008


If the ARC decides your child is eligible (which means that your child has a disability
and needs specially designed instruction and related services), you will be given a
written notice explaining that decision. The ARC must develop a written Individual
Education Program (IEP). The Admissions and Release Committee (ARC), with
parents as members, uses the full and individual evaluation results to determine if a
child is eligible under the IDEA, which means that the child has a disability and needs
special education and related services because of the disability. The school district will
do its best to have you take part in all decisions about your child. This includes asking
you to attend the ARC meeting to discuss the results of the evaluation and to decide if
your child is eligible under the IDEA.

Development of the Individual Education Plan

If the ARC decides that your child has an educational disability and needs specially
designed instruction (SDI) and related services, the ARC will develop an Individual
Education Plan (IEP) for your child. An IEP is a written plan of action describing the
specially designed instruction and related services needed to meet the individual
educational needs of your child. The district is obligated to provide a Free Appropriate
Public Education (FAPE) for all children with disabilities. Remember, you should always
be given the opportunity to be a part of the ARC process that plans and reviews the IEP.
The ARC should include you, your child (when appropriate), staff from the school district
and other people invited by you or the school. The district will want to ensure you are
able to fully participate by arranging for an interpreter or a translator if needed.


After the IEP is written, the ARC will decide where the specially designed instruction
and related services will be provided. The ARC will consider what the least restrictive
environment is for your child based on his/her IEP. This is called placement.
Remember, the least restrictive environment is not the same for every child.
Your child has the right to receive instruction and to take part in school activities in the
least restrictive environment (LRE). This means that, as much as possible, your child
has a right to participate in school programs and activities with children who do not have
disabilities. LRE includes activities like math and reading, art, music, drama, physical
education, meals, field trips, sports, and special interest clubs like yearbook, Spanish
club, Student Technology Leadership Program, and computer club.

The KEY questions in determining the least restrictive environment are:
    What does the IEP say your child needs?
    Where can your child receive what the IEP says he or she needs and can this be
     with other children who do not have disabilities?

                                        DRAFT April 2008

The ARC will consider a number of classes and schools or facilities where your child
could receive specially designed instruction and related services, but the first place
considered is always general education classes in a regular school.

Where your child receives educational services depends on the kind of support he/she
needs, the supports that are given to the teacher, and the changes that can be made
within the classroom setting. Some children with disabilities will receive educational
services in general education classes in regular schools, while other children may
receive educational services in separate special education classes or schools.

Once you have given written permission for placement, your child will begin to receive
specially designed instruction and related services based on the IEP. Qualified
teachers and related service providers will provide the instruction and services stated in
the IEP. ―Qualified‖ means that the individuals are certified or licensed by the state to
perform the services. Specific names of IEP implementers are not written on the IEP;
only the titles of the persons who will be providing the service(s) (e.g. teacher of special
education, teacher of general education, OT, PT) are listed.

Implementers are responsible for providing instructional activities to help your child
achieve the goals stated in the IEP. Implementers are also responsible for keeping
records and reporting on how your child is doing during the year. These records show
that services were provided and how your child did. These records also are used to
make decisions at the annual Admissions and Release Committee (ARC) when the IEP
is reviewed.

Federal and state regulations require the Admissions and Release Committee (ARC) to
periodically review your child's Individual Education Program (IEP). This ARC meeting
must be held at least once per year to determine if annual goals have been met. This
review is the annual review.

Even though an ARC meeting must be held at least once a year to review your child's
IEP and placement, you or any member of the ARC may request a review at any time,
should a new issue come up. The parent may request an ARC meeting to discuss
issues/questions regarding the evaluation, eligibility, IEP, or placement. The parent
may call the school counselor, special education teacher or principal to arrange the

When it is time for the annual review of your child's IEP, the school district will notify you
in writing about the ARC meeting. The ARC reviews your child's IEP and records kept
by teachers and related service providers to decide if goals have been met. The ARC
also must decide if your child still needs specially designed instruction and related
services. If services are still needed, the ARC reviews your child's IEP, revises it if
necessary and decides where services will be provided.

                                       DRAFT April 2008

Regulations also require the school district to re-evaluate your child on or before the
third anniversary of the meeting when the ARC determined your child eligible for
specially designed instruction and related services. You or any ARC member may ask
for a re-evaluation sooner than every three (3) years, but not more often than once a
year unless agreed upon by the parent and local district, under the 2004 IDEA

If you do not understand the evaluation, you cannot give informed consent. Parents
must know what the evaluation results mean to make good decisions about their child‘s
identification and the IEP.

What is an IEP?

When your child is determined to be eligible for special education services, an Individual
Education Program (IEP) is written. The IEP is a plan developed by the Admissions
and Release Committee (ARC) to identify the services and supports necessary for a
child to be successful in school. It is a written agreement between parents and the
school of what constitutes a free, appropriate public education (FAPE) for the child,
which is required by IDEA.

ARC Members
The IEP is developed by a team that consists of the following:

      Parents/guardians
       You, the parent(s), are a very important and equal member(s) of the ARC. There
       is no other person who knows your child better.

      General education teacher
       Under IDEA, a general education teacher should attend the meeting to share
       information about the general curriculum or same aged peers if the child is or
       may be participating in the general education environment.

      Special education teacher
       This should be your child‘s special education teacher or a special education
       teacher with knowledge of the suspected disability. S/he should attend to share
       information about how your child learns. The special education teacher will help
       the general education teacher assess what accommodations and/‘or
       modifications your child will need to be successful in the general education

      Representative of the school district or Placement Specialist
       The district representative/placement specialist is able to provide or supervise
       the provision of specially designed instruction, has knowledge of the general
       curriculum, and has the ability to commit resources.

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If the district representative/placement specialist states that s/he is unable to commit
resources during the meeting, the ARC may have to reconvene another meeting when
s/he can commit resources.

      Psychologist/Individual who can interpret test results
       For any testing or evaluation that may have been done, IDEA requires that
       someone attend the meeting who can interpret test results and how the results
       may impact instruction. The results must be explained so that everyone involved
       understands their implications.

       Individual with expertise of child
       At your discretion, an individual with knowledge or special expertise of your child
       should attend.
      Related service personnel
       If the ARC identifies a need for related services, such as speech-language
       therapy, occupational therapy, social work services, etc. it is important that the
       relevant related service personnel attend the meeting. His or her expertise is
       vital to planning a program.

      Your child
       When appropriate, the child should be a member of the team. Students should
       be involved when they are capable of participating in the decision-making, and
       should always be involved when issues regarding transition are discussed. If the
       student cannot be present or does not want to attend, efforts must be made to
       establish the interests and concerns of the child before the meeting.

      Representative of public agency
       When appropriate, a representative of a public agency to discuss community
       programs and transition services. This agency may be involved in paying for
       transition services.

      Representative of preschool program
       When the child is in the preschool program a representative of that program
       should be included in the meeting.

       While each of these people may not be in attendance at your child‘s ARC, the
       team needs his/her expertise. If your child‘s needs indicate that a specific area
       of knowledge is needed, the team can request their input in writing prior to the

                         Who else can Attend ARC Meetings?

IDEA allows parents or the school district to bring anyone to a meeting who has working
knowledge about the child or the child‘s disability.

                                       DRAFT April 2008

Components of the IEP
The IEP form is broken into several sections, and discussion of each section provides
an agenda of topics to be addressed at the meeting. After members of the ARC have
discussed each topic, the information is added to the form. The team may come with
draft information written, but anything can be added as the team discusses each part.
The components of the IEP and the information they include are as follows:

      Present levels of educational performance (PLEP) – information from the
       evaluation or from prior IEP data and from observation must be retrieved to
       address your child‘s strengths, areas of need, current level of functioning, and
       how the disability may impact his/her involvement in and progress in the general
       curriculum. If your child is in preschool, the IEP will state how the disability
       affects participation in appropriate preschool age activities.

      Special Factors – This is a list of factors that fundamentally affect a child‘s
       educational performance. The team should consider and discuss how these
       factors will be addressed if they are pertinent to the child‘s needs. Special
       factors include:

          o   Behavior
          o   Limited English Proficiency
          o   Visual Impairment
          o   Communication
          o   Assistive Technology
          o   Extended School Year Services

      Measurable annual goals – goals developed to address each of the significant
       needs identified in the PLEP. These are goals that your child should reasonably
       accomplish in one school year. Goals should be written according to your child‘s
       current level of functioning as the measurable starting point and identify where
       the child will be functioning after one school year. There must be a description of
       how the district is going to measure progress on the goals.

      Special education – specially designed instruction (SDI) and related services
       must be stated in the IEP. SDI means changing and/or adapting the content or
       delivery of instruction to: address the unique needs of your child and make sure
       your child has access to the general curriculum in order to meet the educational
       standards that apply to all children. This includes stating the supplementary aids
       and services, modification to the program, and supports for personnel that will be
       provided to assist your child.

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Educationally Relevant: When a child has related services on his/her IEP, the goal is to
enable that child to benefit from special education services in order to ensure FAPE.
Related services should be educationally relevant, meaning that they ensure that the
child benefit from services. There are some factors to consider with educational
relevance: educational program, eligibility, present levels of performance, and skill
levels. The goal of the services is to enable a child to complete instructional activities
and to make the child independent in the educational environment.

      Related services – all related services included on the IEP should be
       accompanied by a designation of the amount of time per week/month the child
       will be receiving the services and where the services will take place. Related
       services can include: speech-language pathology and audiology services;
       psychological services; social skills training; physical and occupational therapy;
       recreation; counseling services; orientation and mobility services; transportation;
       and other services. The related service personnel should be included in the
       development of the IEP.

      Participation with nondisabled children – this identifies the least restrictive
       environment (LRE) for your child to receive his/her educational program.

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Accomodations vs. Modifications

Accommodations refer to "whatever it takes" to make sure that a child with a disability
can participate as fully as possible in the general education curriculum and achieve the
academic content standards. Accommodations are changes in the way that material is
presented (for example, a child may listen to a reading passage on tape instead of
reading it) or in the way a student responds to the material (a student may dictate their
responses to questions instead of writing them), as well as changes in setting, timing,
and scheduling.

Accommodations involve many kinds of techniques, strategies, and support systems.
They help students work around limitations related to their disability. An accommodation
refers to "how" the general education curriculum will be presented to the student with
disabilities so that he can understand the general education curriculum.
Accommodations may include:
•      Visual schedules
•      Scribe
•      Notetaker/assistive technology
•      Calculator
•      Sensory regulation items
•      Paraphrase
•      Visual organizers
•      Reader

Modifications are changes that can be made to "what" students are expected to leam.
For most students with disabilities, modifications should be considered only after all
types of accommodations have been exhausted. Modifications involve partial
completion of program or course requirements. When determining a modification, the
IEP team should ask the following question: What part of the curriculum does this child
need to know that will help them in their adult life? Because the purpose of special

                                            DRAFT April 2008

education services is to prepare children with disabilities for further education,
employment and independent living, that is, for life as adults.

      Participation in state and district-wide tests – individual modifications that will be
       provided for your child to participate in state and district-wide assessment must
       be stated on the IEP. There are three ways that children can participate in

                       Take the test without accommodations;
                       Take the test with allowable accommodations that are provided
                        daily in the general education classroom;
                       Or take an alternate assessment as determined by the ARC
                              Dimension A
                              Dimension B

      Dates and places – a statement of when the services and modifications will begin,
       how often they will be provided, where they will be provided, and how long they
       will last.

      Transition service needs – the ARC identifies a set of activities that promote
       movement from:

                       preschool to school;
                       school to school;
                       school to post secondary education;
                       vocational training;
                       integrated or supported employment;
                       continuing adult education;
                       adult services;
                       independent living; and
                       community experiences and participation.

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       If the child is 14 years or older, the IEP transition service statement will focus on
       the child‘s course of study. The purpose of the transition plan is to assist
       students with disabilities in becoming independent adults, making a smooth
       transition from school to competitive employment/postsecondary education,
       independent living, and community involvement.

      Measuring and reporting your child‘s progress – a statement of how often you will
   be informed (at least as often as students without disabilities) and how you will be
   informed of his/her progress.

The IEP concludes with signatures of all participants. Your signature does not indicate
that you agree or disagree with the IEP, but that you attended the meeting.

The format of the IEP document is designed specifically to guide a step-by-step process
of development with each section building on the previous section. It is important to
remember that the information listed in the PLEP must be accurate in order for the team
to write appropriate measurable goals. When written properly, the IEP documents the
provision of a free, appropriate public education (FAPE).

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                                  Extended School Year
There is considerable information regarding the need for consistency, structure, and
routine when teaching children with autism. It is also known that most children with
autism require extended periods of time to adapt to change, especially in routines. They
tend to have restricted repertoires of activities and interests that we are continually
helping to expand, while using their interests and strengths to teach. Studies report that
young children with autism benefit most from intensive (25+ hours a week throughout
the entire year) intervention on an on-going basis. Instruction for students with autism
must be individualized and those who teach them must understand autism and how it
affects the learning, behaviors, and needs of each particular student.

Therefore, it makes little sense to suspend instruction for long periods of time. Students
with autism are generally inconsistent with their progress due to a number of factors that
include the neurological base of the disability and educators and parents are constantly
seeking ways to increase the child‘s competency. Consistency across time, people,
settings, and instructional strategies is vital to the learning of children with autism.
The courts have established guidelines in determining eligibility for ESY that support the
child‘s rights under IDEA. Although regression/recoupment is a major factor in
determining eligibility, no one single criterion may be used as a sole qualifying factor in
determining ESY eligibility. As established by the courts, there are many factors that
must be considered when deciding on eligibility for Extended School Year (ESY),
including, but not limited to the following:

The IEP team must look at the child‘s rate of learning when determining eligibility
based on regression/recoupment. If the child learns 50% of what typical children
learn in a year, then it may be detrimental to stop services for the summer
because it would take twice as long to recoup these skills when the child is
already behind others of the same age. When looking at data one must look at
data just after breaks in services, such as weekends and school vacations. If a
child regresses over the weekend or after school vacations, then this may make
a child eligible for ESY. If a child regresses over short breaks and it is hard for
him/her to recoup those skills, then a summer vacation will be detrimental to the child.
This makes it imperative that the teacher take data daily. Parents should also take data
to be able to establish regression over short breaks in programming; this data should
include data on critical life skills, as well as academics. If skills can not be recouped in a
reasonable period of time, ESY eligibility should be determined.

Emerging skill/Breakthrough Opportunity/Critical point of instruction
The IEP team must review whether a child is at a breakthrough point in developing a
skill that would increase self-sufficiency. If the child is at a breakthrough point,
interruption in programming may lead to loss of the child‘s current level of acquisition.
This needs to be reviewed on an individual basis for each objective. The team will need
to review data on all IEP objectives targeting critical life skills and look at past
performance on skill achievement.

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Rate of progress
The IEP team must review the expected amount of progress on any IEP goals
and objectives targeting critical life skills. Then they need to determine whether,
without ESY services, the student‘s amount of progress on those IEP goals and
objectives is likely to prevent the student from receiving educational benefit from
his/her educational program during the regular school year.

Lack of progress
If the child has not made progress on the IEP goals and objectives, then ESY e
eligibility should be determined. If not progress is made, then the child is not
benefiting from his.her school program.

The National Research Council (NRC) has recommended that intervention start
as early as possible for children with autism. Early intervention is important to
success for these children. When they are young it is extremely important for
programming to be consistent and intense. Young children with autism need to
have the equivalent of 25 hours a week of intervention throughout the year.

Nature/severity of disability
The team must decide if the nature or severity of the child‘s disability will prevent
the child from receiving benefit from the educational program throughout the
year. Children with autism have a need for sameness, do not react well to
transitions, and have a hard time generalizing skills. All of these characteristics
lead to a need for ESY. The transitions that summer vacation brings, the change
in every aspect of a child‘s life, and the need to help children generalize skills
make it necessary for children with autism to have continuous programming.

Interfering behaviors
The IEP team must determine if any interfering behaviors (stereotypic, ritualistic,
aggressive or self-injurious) targeted by the goals/objectives would have
prevented the student from receiving some benefit from his/her educational
program during the regular school year. The team must also determine whether
interruption on programming for these behaviors is likely to impact the child‘s
ability to benefit from educational programming without ESY services.

Ability of the family to provide educational structure at home
If the family pays for educational services at home, the school district cannot use
this as a reason for denying ESY eligibility. There may be a change in the family
in which they are unable to continue providing educational structure in the home
and this would be a necessary discussion topic in the ARC/IEP meeting to
discuss ESY.

During your child‘s initial ARC (Admissions and Release Committee) / IEP meeting and
at all annual reviews, ESY should be addressed. If previous data indicates regression
after breaks in programming then ESY should be included in the IEP. The team should

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also look at the progress on the current IFSP/IEP, nature/severity of the disability, the
child‘s age, interfering behaviors, emerging skills, and/or any other factors that could
help determine eligibility for ESY. The child‘s need for structure, consistency, and
routine to improve attention and learning of skills should also be considered. The team
should consider the child‘s social interaction and social communication. The child
cannot afford to risk regression in these areas.

One problem, which is often stated regarding providing ESY, is that summer programs
are different than school year programs. The goals, objectives, and instructional
strategies delineated in the student‘s IEP are the consistent guide that should be
continued year round, regardless of the difference in personnel and location. In fact, this
may help the student with autism generalize skills. Additionally, instructional strategies
that have been proven successful should be specific enough that they can be explained
and used by others. Consistency across time, people, settings, and instructional
strategies are vital to the learning of children with autism. Although some of these may
be different during an ESY program, goals, objectives, and instructional strategies
should be consistent and the changes would help a child with autism generalize skills
across people and environments if the supports remain in place.

Nancy Dalrymple, M.A

Extended School Year Services
Autism/Asperger's Digest
March/April Edition
By Marie Jackson

                                       DRAFT April 2008

Summary of Student’s Performance upon Leaving School

IDEA requires that school personnel develop a Summary of Performance (SOP)
document upon a student‘s departure from high school to identify the student‘s level of
achievement in academic and nonacademic areas. This is a separate document and is
not considered part of the IEP.

    Helpful Hints for Preparing for the IEP

   Talk to a parent mentor or an advocate before the meeting. They can give you
    suggestions on how to work effectively with the team at the meeting and explain
    your rights under IDEA.

   Familiarize yourself with educational jargon and acronyms; ask for clarification of
    any you don‘t fully understand.

   Ask for and review evaluation and present levels of performance (PLP) data before
    the IEP conference. Anything you don‘t understand, ask the school for clarification. If
    necessary, meet with evaluator/teacher before meeting to discuss.

   Before the meeting, write down your priorities and questions.

   Make an agenda for the IEP meeting to guide the discussion of points you want to

                                        DRAFT April 2008

   Tell the school whom you will bring to the meeting and ask who will attend from the
    school. This information should be on the meeting notice, however; you may bring
    whom ever you want. As a courtesy, inform the school as soon as you know of a
    new participant; surprise guests are usually not appreciated.

   Gather information you want to share, including medical or other assessments. If
    possible, disseminate to participants prior to meeting.

   Bring a friend to the meeting to help in taking notes and clarifying information

   Let the school know if the meeting time or location does not work for you. Offer
    alternative suggestions in writing to the school.

   Ask the question "How is this going to help my child?" This will help focus the
    discussion of services and supports being considered.

IEP Questions to Consider

       Are my child‘s goals measurable? That is, does the IEP state his/her level of
        functioning now so that is can be compared to his/her functioning in the future to
        determine how much, if any progress has been made?
       Does the IEP identify the modifications, accommodations, and other supports my
        child needs to succeed?
       Does the IEP identify who will provide what service and how much time will be
        spent on those goals?
       How do you measure where my child is currently performing now?
       Are we setting reasonable and realistic expectations pf progress for my child?

                                  DRAFT April 2008

   How often will my child‘s IEP goals be reviewed and how often will we meet to
    review progress?

                                       DRAFT April 2008

Education: Navigating the Rough Waters

When You Disagree with the School District’s
The Individuals with Disabilities Education Act (IDEA) values the input of parents
regarding their child‘s education program. It provides for actions parents can take when
they disagree with school district personnel about their child‘s educational program.
These are options parents have:
   1. Request a case conference – this is a meeting with school personnel to discuss
       concerns and explore how to resolve the issues.
   2. Request an administrative review – this is a meeting that will include the district
       superintendent or designee to review the issues of disagreement. This person is
       able to reverse the decision of school personnel.
   3. Request mediation – this occurs when parents and schools cannot agree after
       both the case conference and administrative review. You and the school must
       both agree to mediation. A trained, qualified and impartial representative hired by
       the Kentucky Department of Education will be assigned to conduct the mediation
       between you and the school district representatives. The school district will take
       responsibility for scheduling a mediation time that you, the mediator, and the
       school district representatives agree upon.
   4. File for an impartial due process hearing – this is a formal, administrative
       procedure that is held to resolve disagreements between the parents and the
       school district. The district will contact the Kentucky Department of Education
       and a list of potential impartial hearing officers will be sent to the district. In
       Kentucky, all hearing officers must be attorneys and all hearing officers must
       have completed training on the process through the Kentucky Department of
       Education. Parents and the school have to agree upon a hearing officer to hear
       the case.

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Complaint Process
Parents may also file an official complaint with the Kentucky Department of Education.
This is an official notice that a school district may have violated one or more of the
federal or state special education laws. Complaints must be about students, or groups
of students who are eligible or thought-to-be eligible for special education services.

This does not require a hearing officer. The complaint is reviewed by staff of the
Kentucky Department of Education who investigates the complaint by talking with both
the parent and the school districts to establish the facts of the case. An official decision
is made regarding the complaint and the parent and the school district are informed in
writing of the decision of the Kentucky Department of Education. If the district is found in
violation of federal or state law, the district is required to correct the violation.
Complaints must be made in writing and sent to the Kentucky Department of Education,
Office for Exceptional Children, 25 S. Front Street, Columbus, Kentucky 43215.

Types of Disagreements
School district denies the request to perform a multi-factored
evaluation (MFE)
In order for a child to be eligible parents‘ special education services, the child must meet
two conditions. The child must:

   1. Have a disability under one of the 13 IDEA categories, and
   2. The disability must have a documented adverse affect on the child‘s educational
If the school does not observe an adverse affect on the child‘s educational performance
based upon educational data, the school may refuse to perform an MFE when parents
request one.
If the school district refuses to perform an MFE, it must provide the parents with a prior
written notice letter. The letter must contain information regarding why the evaluation
will not be provided and what documentation was used to determine that an evaluation
is not needed.
In response the parents may do one of the following:
• Request a mediation with an Kentucky Department of Education-appointed mediator to
    review the issues of disagreement and make a decision, or
• File a complaint with the Department of Education, Office for Exceptional Children

                                        DRAFT April 2008

School district determines that the child is not eligible for special
education services after the MFE is performed
If this happens, parents can refuse to agree with the results of the MFE and request an
independent educational evaluation at public expense. A request for an independent
evaluation should be made in writing.
The district can agree to provide for an independent educational evaluation and provide
parents with a list of approved evaluators that parents can use at the school‘s expense.
Parents may choose an evaluator from the list or choose someone else.
For a publicly funded evaluation, the school must agree to the evaluator that the parent
chooses. IDEA requires that the school agree to the location of the evaluation and the
qualifications of the examiner (they must be the same as the criteria for evaluators that
the district uses (such as a licensed psychologist).
The school district can initiate a due process hearing to show that its first evaluation is
appropriate and, therefore, deny the independent educational evaluation. In this case, a
hearing is scheduled before a hearing officer while the school presents evidence to
support its position and the parents do the same. The hearing officer then decides if the
school must provide for an independent educational evaluation.
Any time a district refuses the independent evaluation at the school‘s expense, parents
have the option of obtaining an independent evaluation at their own expense. When the
parents receive the results of any independent educational evaluation, they must
request a case conference in writing with school district personnel to consider (and
discuss) the results of the evaluation. At this meeting, parents are requesting school
district personnel to review any decisions related to the child‘s eligibility or educational
programming based on the new information provided.

If parents and the school district disagree after a review of the
independent evaluation results
If you and the district cannot come to an agreement about how to address your child‘s
needs, parents can file for an impartial due process hearing, as described in option
number 4 above.

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The IEP is not appropriate or is not being implemented appropriately
If this is the case, request in writing a review of your child‘s Individual Educational
Program with the team and identify your concerns. At this meeting the team can
address your concerns and make revisions to the IEP, if appropriate, or identify
additional areas of assessment and programming needed to address your concerns.
If you can‘t come to agreement about your concerns, refer to the parent‘s options
sections above. For more information, you can also refer to the booklet provided to you
by the school district about parent‘s rights called Whose IDEA Is This? IDEA requires
that all schools provide parents of children with disabilities with information about their
rights. Whose IDEA Is This? describes parent‘s rights in detail and lists the procedural
safeguards afforded to you as a parent under IDEA.
In addition, IDEA funds parent training and information centers in every state and
territory specifically to answer parents‘ questions about special education issues and
provide training to give parents the information they need to advocate for their child‘s
educational interests. In Kentucky, parents can call the Kentucky Coalition for the
Education of Children with Disabilities at (800) 374-2806.

Section 504
If you do not want to pursue a due process hearing to challenge the school district‘s
decision about your child‘s eligibility for special education services, another mechanism
is available to obtain accommodations for your child. When a child has an identified
disability that does not meet the criteria under one of the 13 IDEA categories or that
does not adversely affect the child‘s educational performance, parents can request that
the district provide the child with a 504 Plan. This may be the case for children with
Asperger Syndrome.
Section 504 of the Rehabilitation Act is a broad civil rights statute that prohibits
discrimination on the basis of disability. It states that no person with a disability can be,
by reason of his or her disability, denied access to or excluded from participation in or
denied the benefits of a public program or service.
Upon request, a 504 Plan is developed to provide the accommodations necessary for
the individual with a disability to access an identified service or program. Each local
district is required to identify procedures to implement the requirements of Section 504.
A district is also required to identify individual(s) responsible for the coordination of
Section 504 services. Ask for information regarding your district‘s procedures for
compliance with Section 504.

                                       DRAFT April 2008

Importance of Knowing Your Educational Rights
It is important to approach the educational planning for your child with the school team
from a positive perspective. Be open to ideas and solutions as long as they meet your
child‘s needs. Still, understand that you have the right under IDEA to question the
school district‘s decisions and that there are procedural safeguards written into the law
to help you protect your child‘s right to a free and appropriate public education.
Several resources are available to help parents understand their rights regarding the
education of their child. The Kentucky Coalition for the Education of Children with
Disabilities (see contact information below), the Autism Society of Kentucky (see
contact information below), and other local autism groups provide parent trainings on
educational rights on a regular basis. These groups also offer assistance to families by
phone and through their websites. There are many websites available that also provide
information for parents on advocating for their child‘s educational rights.

(Information adapted from materials developed by the Kentucky Coalition for the
Education of Children with Disabilities, Marion, Kentucky. Used with permission).

Autism Society of Kentucky, (330) 376-0211 or (330) 376-1226:
National Center for Learning
National Dissemination Center for Children with
Kentucky Coalition for the Education of Children with Disabilities, (800) 374.2806;
Wright, P., & Wright, P. (n.d.). From emotions to advocacy – The special education
      survival guide. Hatfield, VA: Harbor House Law Press, Inc. (Available from
Wrights Law Special Education Law and Advocacy:

                                        DRAFT April 2008

                                 Glossary of Terms

Admissions and Release Committee Meeting (ARC) - The ARC is made up of the
parent, child (if appropriate), regular education teacher, special education teacher,
administrator or designee and others as appropriate. This group is responsible for
identification, evaluation, placement and developing, reviewing, or revising an individual
Education Program for a child with a disability.

Alternate Assessment (Portfolio) - The alternative assessment is an option for
children who have the cognitive inability to complete a regular course of study leading to
a traditional diploma.

Assistive Technology Device - any piece of equipment or product system, whether
acquired commercially, off the shelf, modified, or customized, that is used to increase,
maintain, or improve the functional capabilities of individuals with disabilities.

Assistive Technology Service - is any service that directly assists an individual with a
disability in the selection, acquisition, or use of an AT device.

Free Appropriate Public Education (FAPE) - public education provided at no cost to the
parent, and in accordance with an Individual Education Program.

Individuals with Disabilities Education Act (IDEA) - The federal law that requires states
to provide children with disabilities a free appropriate public education that modifies and
extends the Education for all Handicapped Children‘s Act.

Individualized Educational Program - A written plan of action which includes a student‘s
present levels of performance; annual goals directly related to each area of need;
short-term instructional objectives; all necessary specially designed instruction and
related services; transition services; extent of participation in regular education; dates

                                         DRAFT April 2008

for initiation and anticipated duration of services; amount of time child shall spend
receiving each service; evaluation procedures; implementers or persons responsible.

Related Services - transportation and such developmental, corrective, or supportive
services required to assist a child with a disability to benefit from special education. For
example, speech therapy is considered a related service.

Least Restrictive Environment - The educational setting in which the child with a
disability can learn effectively, based upon unique needs and capabilities.

Present level of Performance (PLOP) - the first component of the IEP that describes the
current performance level, abilities, and disabilities of a child with a disability.

Referral - written information about a student suspected of having a disability that may
include: personally identifiable data; a description of the areas of concern; an
appropriate instruction; support services and interventions provided for any area of
concern that adversely affects educational performance.

School Records - (cumulative and other available records) are documents and other
written information directly related to a child, which are collected, maintained or used by
the school district to make IEP decisions.

Specially Designed Instruction (SDI) - adapting, as appropriate, the content,
methodology, or delivery of instruction to address the unique needs of the child with a
disability and to ensure access to the general curriculum.

Transitions - a coordinated set of activities for a child with a disability that is designed
within an outcome-oriented process, promotes movement from school to post-school
activities, and is based on the student‘s needs.

                                  DRAFT April 2008

An Educator's Guide by the Organization for Autism Research

An Educator's Guide to Asperger Syndrome by the Organization for Autism

Educating Children with Autism Committee on Educational Interventions
for Children with Autism
National Research Council
Read for free at

The Puzzle of Autism National Education Association and the Autism Society of

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                 CHAPTER 6
           Social Service Programs

Kentucky Social Service Agencies

                                    DRAFT April 2008

Kentucky Autism Training Center (KATC)
The mission of the Kentucky Autism Training Center is to enhance supports for persons
with autism by providing information and technical assistance to families and service
providers across Kentucky. The serves as a statewide clearinghouse for information
about ASD; maintains a collection of resources, including books, CDs and DVDs for
loan at no cost to parents and professionals. It provides professional development
opportunities on ASD and; maintains a service and supports database that is
searchable online. For more information, contact KATC at 502-852-4631 or check the

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Federal Assistance Programs
*Supplemental Security Income (SSI)
Based on parents‘ income, some children with disabilities are eligible to receive a cash
benefit through Supplemental Security Income (SSI). Eligibility requirements are related
to family income, including income from salary or wages, as well as savings and
property. In other words, the amount of money or property a family has determines how
much SSI a child can receive each month. Children may become eligible to receive
benefits themselves when they reach the age of 18 if they cannot work.
To be eligible under the disability rules, a child must have a ―marked and severe‖
functional limitation from a physical or mental condition. Children who are eligible for
SSI benefits are also eligible for medical care under Medicaid.
Apply for SSI for your child by contacting your local Social Security Administration office
or by calling the following toll free number (800) 772-1213. Have your social security
number available when you call.

*Social Security Disability Insurance (SSDI)
Social Security Disability Insurance (SSDI) is a program that provides for a worker who
becomes disabled and who has paid into social security. Sometimes SSDI also pays for
the worker‘s dependents. When a worker retires, becomes disabled, or dies, any
dependent children will get monthly cash benefit. How much the child receives depends
on the size of the benefit the worker received. There is a cap or a maximum amount one
family can receive, when both the worker and dependent children get benefits.
Apply by contacting your local Social Security Administration office or by calling the
following toll free number (800) 772-1213.

*Internal Revenue Service: Tax Deductions and Tax
Credits for Families
According to IRS rules, a federal tax credit is available for eligible low- and moderate-
income individuals and families who work. The Earned Income Tax Credit (EITC)
reduces the amount of tax you owe. In 2001, workers with one eligible child could apply
if their income was less that $27,413. You can complete an assessment online to
determine if you are eligible at:

*Tax Deductions for Medical Expenses
Eligible medical expenses may be used as a tax deduction under IRS rules. The
deduction can be taken only for unreimbursed medical expenses that amount to more
than 7.5% of the adjusted gross income. To be eligible, parents must itemize deductions
and not take the standard deductions.

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Eligible expenses include health insurance payments, dental payments, transportation
and hotel costs associated with getting medical care, and costs for assistive technology
and durable medical equipment. You can combine the costs of medical care for yourself,
your child with a disability, and any other family member to reach the 7.5% limit required.
For more information, contact the IRS at (800) 829-3676 or visit the IRS website at

                         Non-Profit Organizations
Lions Club International
Since 1917, Lions Clubs have offered people the opportunity to give something back to
their communities. Lions tackle problems like blindness, drug abuse prevention, and
diabetes awareness. The organization has a rich history of helping low-income
individuals with disabilities, mostly with vision and hearing disorders, by providing grants
for medical equipment, surgeries, glasses, hearing aids, and so on.
To find the club closest to you, visit
You may also contact the Lions Club headquarters at (630) 571-5466.

Sertoma Club
Sertoma is an international organization dedicated to ―SERvice TO MAnkind.‖ Every
year Sertoma clubs raise more than $20 million for local community service projects.
Through these projects, as well as grants and scholarships, Sertoma clubs return those
funds to their respective communities. Since 1963, Sertoma clubs have assisted more
than 24 million Americans who have speech and hearing disorders through its varied
programs, scholarships, grants, endowment campaigns and local events.
To find the chapter close to you visit the Sertoma website at
You may also contact the Sertoma headquarters at (816) 333-8300.

Rotary International
Rotary is a worldwide organization of business and professional leaders that provides
humanitarian service, encourages high ethical standards in all vocations, and helps
build goodwill and peace in the world. Rotarians worldwide provide individuals with
disabilities with education, employment, accessibility, and equal participation
opportunities. Each club develops its individual service program from nine areas – one
of which is helping people with disabilities. Several clubs have donated medical
equipment and helped fund surgeries to low-income individuals with disabilities.
Rotarians also work with children with disabilities in community programs like sporting

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To find the club nearest you, contact the headquarters at (847) 866-3000 or visit

Kiwanis Club
Founded in 1915, Kiwanis International is an organization of service- and community-
minded individuals who support children and young adults around the world. Service
projects also address other needs within the community, such as working to stop
substance abuse, helping the elderly, promoting literacy, supporting youth sports and
recreation, responding to disasters, and supporting specific persons in need.
Aktion Clubs are community service groups made up of adults with mental and physical
disabilities who perform service to help others. It is a sponsored organization of the
Kiwanis Club. The purpose of the clubs is to provide a way for adults with disabilities to
develop leadership skills, to serve their communities, to be integrated into society and to
demonstrate the value and dignity of citizens living with disabilities.
Contact the Kiwanis headquarters for more information, (317) 875-8755 or visit the
website to find a Kiwanis Club or Aktion chapter near you:

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             Parent and Family Support Programs
Regional and Local Autism Groups
Several regional and local autism organizations and parent support groups exist around
the state. Contact the KATC at 502-8524631 for a list of local groups


Up in Kentucky


Partnership for Families and Children

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Foster Care and Adoption
The Out of Home Care Branch focuses on children placed out of their home of origin assisting
the cabinet in achieving safety, permanency, and well-being outcomes for children and
The branch is responsible for developing programs that support children's attainment of
permanency and stability in their lives. foster care, private child care placements,
kinship care and interstate compact are all services within the branch that provide for a
child's placement needs. Additionally, the Out of Home Care Branch develops
standards of practice and services to support the child and their family while placed in
out of home care.

Help with foster care
Training for Foster Families - Certification of Foster Families
Child Removed - Foster Care Statistics

Foster Care Information - (800) 232-5437
Out of Home Care Branch - (502) 564-2147

The Adoption Services Branch is responsible for program oversight and planning in
the area of adoption services. The primary focus is timely permanency planning and
achievement for committed children in out of home care.

The Department for Community Based Services (DCBS) is the primary adoption agency
in Kentucky. DCBS places hundreds of children and youth for adoption each year. Most
of these children were removed from their birth parents by court order for a variety of
reasons. A majority of them have emotional scars from a background that includes
abuse or abandonment. These children have been maltreated and exploited. Parental
rights were terminated because the parents were unable or unwilling to provide proper
care for their children.

The children are considered "special needs" because they are older, have brothers and
sisters that need to be placed with them or they have moderate to severe emotional,
physical/medical or mental disabilities. These are the most difficult to serve children in
an adoption program. From a parenting perspective, your primary task is to teach the
child to trust adults.

By Kentucky statute, DCBS is involved in every adoption that occurs in the state. In
placements made by licensed private agencies and independent placements, the
department receives and processes copies of the adoption application and/or petition.

The Adoption Section
Adoption allows adults to become the legal parents of children not born to them. In
Kentucky, hundreds of children wait for the love and security of an adoptive family. Most

                                      DRAFT April 2008

of these children are older, have special physical, mental or emotional needs, or they
are part of a sibling group. Adoption can give these children a brighter future.

For help with adoption please call 502-564-2147

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                                    CHAPTER 7
Definition of Advocate: One who pleads or speaks for another.

The above definition of advocacy is plain, simple, and easy to understand. However,
the ―process‖ of advocating is not that simple unless you are well educated about your
child‘s disability, knowledgeable about your child‘s rights especially within the
educational system, and firmly believe that no one can best advocate for your child
more than you.

We all have heard before the saying, ―I had no choice in the matter.‖ Well, this is
certainly the case with respect to advocacy. As parents, we have no choice but to
advocate for our children. We cannot sit and wait for someone else to do it for us. As
parents, we need to develop a sense of urgency that will help set the standards for your
child‘s future.

What choice you do have; however, is the "level" of advocacy you want to take on. You
can advocate at the individual level (e.g., for your child only) or at a more local or state-
wide level. Advocating at a local or state level takes more time and coordination with
other advocates for the same disability, but you can take on a very important role in
your community by getting more involved in this manner and create real change for all
those affected with autism.

You will always receive, more times than not, advice from everyone around
you…….family, doctors, teachers, and other professionals who have your child‘s best
interest at heart. While advice is important, always remember, “You know your child the
best.” You are living and breathing your child‘s disorder on a daily basis. As a result,
you should feel confident and competent about what you should be advocating for
whether it‘s during structured meetings with professionals or casual conversations with
family members.

Believe not only in your child, but in your ability to advocate at all times!

―Parents are the true educators of their children. Teachers, psychologists, and other
support staff are consultants to those parents.‖ Nichols Hobbs

                                       DRAFT April 2008


1.       Become Informed –learn what exists to help your child
        Join groups who have meetings and newsletters- they have lots of information to
        Go to trainings
        Use websites

2.       Know and Understand Your Rights
        Contact Protection & Advocacy for free information and assistance
        Read books such as From Emotions to Advocacy by Wrightslaw

3.       Learn How to Play the Role of Advocate
        Be prepared
        Keep your files and records organized
        Know what you want and be specific
        Build positive, respectful relationships with professionals
        Ask questions about anything you don‘t understand
        Become a good listener
        Write it down
        Practice beforehand what you‘re going to say in meetings
        Get professional opinions in writing
        Don‘t personalize statements made by others-focus on your child not others
        Offer help and support to professionals when you can
        Pick your ―battles‖ wisely
        Realize that sometimes advocacy fails, know when to stop and try something
        Thank people for their time

Stages of feelings

Parents go through many normal feelings when they have child with a disability. There
may be anger, denial or depression. Becoming an advocate can help with some of the
feelings of powerlessness that you may feel. Even after coming to acceptance we can
find ourselves back into negative feelings at different times in our child‘s life.

Know that this is normal and understand that your ability to be an effective advocate can
be challenging at these times. You may need to reschedule meetings or make sure you
have a strong, supportive advocate to help you.

                                      DRAFT April 2008

Advocacy by parents and family members is essential to ensure that children with ASD
have an opportunity to achieve their fullest potential. As important as professionals are
in furthering our knowledge of individuals with ASD and how to meet their needs,
parents and family members have been critical in their role of educating professionals
and policy makers.
As parents, we evolve from the time we first encounter the diagnosis of our child from
needing information and support to becoming educated and providing support and
information to others. Because we all talk about what is important to us, we naturally
become advocates as we talk with other parents about our experiences.
The opening above illustrates a parent coming to the realization that what she knew
about her children and what she had learned about the service system as she
supported her children was knowledge that could make a difference for others.

Levels of Advocacy
1. Advocating for your child
The first step in becoming an advocate is learning to advocate for one‘s own child.
Parents must learn about the diagnosis and what it means for their child‘s development,
about the services and supports available to address their child‘s needs, and about how
to work with professionals to ensure that their child‘s needs are met. These skills are
learned by:
       • reading pertinent articles, books, and websites
       • participating in IEP meetings and other service planning meetings
       • talking with other parents who are willing to share what they know
       • attending training and discussions offered by parent support groups and parent

2. Sharing information with other parents
The next level of advocacy is sharing information with another parent who needs it. This
can be done informally in the hallway at school, in a parent support group, or over the
phone. It can also be done more formally by leading a parent support group discussion
on a topic or by providing a training session to a group of parents on a particular topic.

                                        DRAFT April 2008

3. Supporting a parent in a service planning meeting
This level of advocacy is when a parent chooses to attend an IEP meeting with another
parent to help that parent participate fully when she is unfamiliar with the process, or
when he feels his concerns are not being addressed.
4. Participating in activities to influence how services are delivered
At this level parents advocate to change or influence the laws, regulations, and policies
that affect the provision of services their child and other children with ASD or other
disabilities need. At that point, child advocacy becomes systems advocacy.
5. Encouraging your child to advocate for himself
It is important that parents of a child with autism work with their child to be his/her own
advocate. Individuals with autism need to be encouraged to share their strengths and
unique talents with others. This will allow members of the community to better
understand what individuals with ASD can contribute to their communities.
We need advocates at all levels. Parent-to-parent support is critical for parents when all
they have is a diagnosis and a load of questions. No one is more effective at answering
those questions than another parent who has been in the same place. The Individuals
with Disabilities Education Act (IDEA) acknowledges the importance of parents
providing information to other parents by providing funding to support at least one
parent training and information center run by parents in each state. Many parents have
served in an advocacy role by helping to create this document to provide information to
other parents.
When parents are educated about their child and about the service system, they are
able to take an active role in supporting other parents and in providing input to public
agencies and policy makers about effective ways of supporting individuals with ASD. By
making their voices heard, parents can help create the schools and communities where
the people they love can live, work and play.

Kentucky Protection and Advocacy
P&A provides information/technical assistance, education and training on legal rights of
person with disabilities and written material on a variety of disability issues. They
provide some legal council based on yearly priorities.
Toll free: 800-372-2988

The Arc of Kentucky
The Arc advocates for persons with intellectual and developmental disabilities. They
have a newsletter, HOT STUFF( an e news letter), Family to Family( a network for
families that have children with special health care needs), and Advocates in Action
(training for people to become advocates)
Toll free 800281-1272

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Where to Advocate
There are many areas related to aspects of service delivery where parents‘ voices need
to be heard. At the local school district or at the state level, here are some issues that
parents have identified as important.

      Increasing the number of educators who understand the complexities of ASD
      Placing students with ASD appropriately to best support their needs
      Providing accommodations and/or modifications tailored to the student‘s needs
       (not according to the student‘s label)
      Using research-based methods for instruction
      Providing social skills training and development
      Encouraging the full participation of children with ASD
      during the school day and in after-school activities
      Providing effective transition services to ensure jobs and community living
      Increasing partnerships with families

      Increasing early screening and diagnosis opportunities
      Educating medical personnel who may come in contact with children with ASD
      Increasing the availability of specialists knowledgeable about ASD
      Encouraging medical personnel to work in partnerships with families

Social Services
      Increasing the number of providers who specialize in the unique needs of
       children and adults with ASD
      Making providers more easily accessible
      Encouraging providers to work in partnership with families

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The Importance of Parent-to-Parent Support
in Advocacy
Parent-to-parent support offers not only emotional support, it also serves as a step in
learning to advocate effectively. Many organizations working to improve supports for
those with disabilities were originally created by concerned family members. In any way
you can, online or through parent support groups, stand with other parents and family
members. When you do that, you become involved in systems advocacy.
We make countless decisions in the process of living with ASD. Since such decisions
are individualized, you may find yourself choosing different treatment options than other
parents. Or you may become involved with an organization that is different from what
other parents or family members prefer. Your child may be significantly affected by
autism and you may know families who have children that are only mildly affected and,
therefore, feel you do not have that much in common.
It is unrealistic to expect everybody to agree on every choice. It is important to respect
each family‘s choice and also stand with them to support policy changes or legislative
changes that will make a difference in our communities, our state, and our nation. A
large strong united voice cannot be ignored. Here are some pointers for systemic
      Get involved in efforts that impact the entire ASD community.
      Be publicly supportive of programs and services that may help any person
       affected by ASD, even if it does not affect your family directly.
      Respect each individual‘s level of commitment to advocacy however small or
       large it may be.
      Give first priority to being the best advocate you can for your child and family.
       Consider all the demands you may face at the current stage of your journey.
Individuals with ASD are entitled to rights and services. This statement sounds simple
and straightforward, but as many parents and family members know, it can get
complicated and be frustrating when you are working with a system that does not
understand your family member‘s needs. People with their own agenda are often urging
law makers to make decisions that are not appropriate for our

                                      DRAFT April 2008

ASD community, such as mandating one specific type of intervention be used with all
children with ASD. At these times, your voice needs to be heard. You have the personal
experience that others may not. Let your locally elected officials know how you feel on
certain issues and suggest how they should vote on proposed policies, budgets, and
    There Are Many Ways You Can Advocate: Home, School, and Community

         Join an advocacy organization
         Advocate for your child
         Advocate for other children
         Call/write/email your legislators
         Vote
         Call a radio station to explain your
         position on a particular topic
         Write a letter to the editor of your local paper
         Hold a town meeting to discuss issues of concern
         Attend a school board meeting to discuss your concerns
         Attend local/state social services board meetings to discuss your concerns
         Join local or state committees that address what you are trying to accomplish
         Visit your senator
         Attend a rally at the State House to raise awareness of ASD

Tips for Talking with Leaders
       Always be respectful, courteous and professional.
       Thank them for the job they are doing.
       Educate yourself on the issues.
       Be brief and to the point.
       Ask for reasonable objectives.
       Don‘t be negative.
       Get to know contacts on their staff.
       Write letters thanking them for their time and efforts.
       Offer to serve as their ―autism expert.‖

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Grassroots Advocacy
―Grassroots‖ advocacy refers to people working together to write letters, place calls,
send emails, and visit officials to communicate ideas and opinions to government
officials. Most of the time, efforts are concentrated to senators, representatives, and
agency personnel. As a constituent, you have the right to express your opinion and
advise your elected officials about the issues that you are knowledgeable about.
Start small. Begin with your own child. This means working with your child‘s teacher,
school district and/or even school board on issues that arise regarding your child‘s
educational progress.

Awareness Campaigns
An awareness campaign is slightly different from advocacy work because it is geared
toward educating a particular group of people or the general public. A good example of
an awareness campaign is the annual Autism Awareness Month promoted by the
Autism Society of America (ASA) and celebrated every April. Each ASA chapter is
encouraged to hold events, obtain proclamations, and distribute literature to the local
community to inform them of the issues related to autism.
Local organizations often plan public events like runs and walks, community festivals, or
open houses to help community members learn about autism and raise money for
research or other projects. If you are interested in planning an event in your town, talk
with other parents and family members to get their support. Also contact a state
organization like the Kentucky Autism Training Center. They can link you with national
organizations that may provide materials and guides for planning and staging events.
Some national organizations are ASA (
Cure Autism Now
(, and
Autism Speaks (

                                       DRAFT April 2008

Ways to Spread Autism Awareness
Sponsoring a community-wide campaign is a major undertaking. But there are many
other, less time-consuming ways to spread awareness, including the following:

      Arrange to give a presentation to students at your local public school.
      Volunteer to educate local first responders (police, firefighters and paramedics)
       on how to handle individuals with ASD.
      Take time to educate your own family so they can become advocates for your
       child with ASD, as well.
      Write a letter to the editor of your local paper during Autism Awareness Month to
       outline the severity of the problem and what needs to be done.
      Wear the autism awareness ribbon, autism awareness bracelets or pendants
       every day.
      Stick an autism awareness ribbon magnet or bumper sticker on all your vehicles.
      Buy a Kentucky autism awareness license plate a
      Distribute informational literature from national groups like ASA and Autism
       Speaks to local doctors, human service agencies, professionals, and therapists,

On March 18, 2005, the Governor signed House Bill 296 into law establishing the
Kentucky Commission on Autism Spectrum Disorders. Sponsored by state Rep. Scott
Brinkman (Louisville), the legislation charges the agency with development of a
comprehensive statewide plan for an integrated system of training, treatment and
services for individuals of all ages with an ASD.

The 22-member commission first met August 22, 2005 and named subcommittees to
address the following issues: identification and intervention; services/transition; best
practices and training; and funding. The commission is composed of members from key
state agencies and nine appointed community members. The appointed members
ensure broad representation of Kentucky's citizens concerned with the health and
quality of life for individuals with an ASD.

Learn more about the Kentucky Commission for Autism Spectrum Disorders at:

It is important for you to make your voice heard by your state and federal legislators.
You can identify your current state legislators by visiting . Contact your legislators and make them
aware that you have a family member with ASD. Describe the challenges faced by
individuals with ASD and their families in Kentucky and the barriers they encounter in
getting needed services. Remember to always be constructive and considerate.
Our legislators represent us – and they want to hear from us. The best way to do so is
via post card, letter, or fax. They are bombarded with email so it is not always effective.

                                       DRAFT April 2008

You can also hold a ―candidates‘ forum‖ and invite several candidates to meet with
families dealing with autism in their district to hear their stories and learn about their
needs. Don‘t invite legislators in for a complaint session, but for positive dialogue on the
issues. Remember, we want them thinking about how to be a part of the solution.

Finally, when you find candidates who support your positions, support them financially.
Private citizens can contribute $50 per person or $100 per couple to the candidate of
their choice and receive a dollar-for-dollar tax credit! Nothing speaks to our legislators
like money and votes.

                                        DRAFT April 2008

                                   CHAPTER 8

                                Future Planning
My sons have reached the age where we need to plan for their future,
but this process is only happening on a limited basis. I have to push for all these
services, and I‘m not sure what is all available for them. I am frustrated as this is critical
for their future!

Donna Littrell

This chapter is critical for planning for the future related to your child‘s life after high
school. Parents should work with school personnel throughout the middle and high
school years to develop a person-centered plan for the future. This chapter includes
many suggestions for planning for the transition of your child from a school program to
adult services and employment and living in the community. It also introduces important
legal and financial planning issues that every family should think about.

Life after High School
Thinking about the future should begin immediately, and it is important to formulate
plans for the future throughout your child‘s school experience.
One of the most challenging times for individuals with ASD and their families is when an
adolescent is about to transition from a school program to the uncertainty of adult
services. Questions about postsecondary education, vocational training, employment,
community living, and sources of financial support for the individual with ASD must be
The Individuals with Disabilities Education Act (IDEA) requires that transition planning
for this shift to adulthood and adult service systems begin by age 16, although it may
begin earlier than age 16 if the IEP team agrees.
The student, parents, and members of the IEP team should work together to help the
student make choices about his path for the future. This will involve discussions about
where he wants to live, what kind of work he wants to do and what recreation and
leisure time activities he would like to be involved in when not working. Transition
planning through the IEP process identifies the student‘s goals and a plan for reaching
them in each of these areas.

Mandated Services Versus Eligibility-Driven Services
One of the biggest changes that parents face at the time of their child‘s transition from
education to community services is the shift from the mandated services of education to

                                        DRAFT April 2008

the eligibility-driven services of the adult service system. All children are entitled to
educational services. But in the adult service system there are no entitlements.
Individuals must ―qualify‖ or be determined eligible for services. Transition services
within education should support parents and their child in applying for the services for
which they are eligible.
In addition to the transition planning within the IEP process, IDEA also requires that the
school develop a document called the Summary of Performance (see Chapter 5) to help
with this planning. When a student is no longer eligible for educational services, the
school district must provide the student with a summary of their academic achievement
and functional performance. This summary of performance must include
recommendations on how to assist the child in meeting the student‘s postsecondary
goals (IDEIA §300.305(e)(3).
As mentioned in Chapter 6 under the section on the Kentucky Department of Mental
Retardation and Developmental Disabilities (MRDD), at age 16 a child who has been
determined eligible for MRDD services will have to be re-evaluated using adult
standards. Your child‘s Service and Support Administrator should discuss this re-
evaluation with you. If not, or if your child has not received MRDD services, call the
MRDD intake worker to schedule an appointment for evaluation for eligibility.
Remember, you have the right to be present during this assessment. If your child is
deemed eligible, she will be assigned a Service and Support Administrator who will
serve as a case manager to assist you in identifying the range of services needed and
in helping you establish her eligibility.
   Ask your service and support administrator to explain all of the services your
   child may be eligible for. Make sure you ask to have your child placed on waiting
   lists as early as possible for any services your child may wish to access in the
   future. You can always decline these services when they are offered if he doesn‘t
   need them. These lists are very long so it is never too early to be placed on these
   waiting lists.
Transition Planning
All students receiving special education services in public schools have regular
meetings with family and school staff to discuss the student‘s IEP. Once a student is in
high school, these meetings should begin to plan for the transition from high school to
adult life. This may be an area that you will need to advocate for your child. If transition
planning is not discussed, please do not hesitate to discuss this important topic with
your child‘s IEP team.

                                        DRAFT April 2008

IDEA defines transition services as a coordinated set of activities for a student that
promotes movement from school to post-school activities, including:
      Education after high school
      Job training
      Range of employment opportunities
      Help with coordinating support services (―case management‖)
      Preparation for living independently in the community
      Recreation and volunteer opportunities
According to IDEA, these activities must be based on the individual student‘s needs,
preferences and interests and include activities in the areas of:
    Instruction
    Community experiences
    The development of employment and other post-school adult living objectives
    Acquisition of daily living skills and functional vocational evaluation
It is important that families and schools start planning early to ease the transition for
the person with ASD and to increase success and independence in adult life.
According to IDEA, this should begin by age 16. Beginning earlier, however, can
only benefit the child and is highly encouraged.
Individualized Transition Planning
Because transition planning is the foundation for a student‘s adult life, IDEA has
provided much guidance to school districts on the content and process for developing
an individualized transition plan to support students with disabilities.
In transition planning the following four points should be considered:
     The plan, including goals and services, must be based on the individual needs,
       preferences, and skills of the person with an ASD.
     Planning should be oriented to life after high school, not limited to what will be
       accomplished before leaving school

                                       DRAFT April 2008

      There should be a master plan that includes long-range goals and a coordinated
       set of activities for each goal.
      The services provided should promote positive movement towards a life after
       school. (Autism Society of America, n.d.)

Interagency Planning
Interagency collaboration is an important part of a student‘s transition planning. Other
agencies and organizations may provide training or direct services to individuals with
disabilities that will help schools support a student‘s transition to community life. Ask
your school district to involve other agencies in developing your child‘s plan for
transition. This can include the local office of the Bureau of Vocational Rehabilitation
(BVR) and the county board of MRDD. (See Chapter 6 for more information on these
Schools may also seek support from other local agencies and organizations, such as
independent and supported living centers, if they are located in your area. Parents
should strongly encourage interagency collaboration as part of transition planning.
Transition planning can involve finding opportunities for job experience for your child.
These can be arranged for the school year and during summer breaks. When a student
is given the opportunity to experience different settings and develop work-appropriate
skills, he will be able to choose the best path. A good transition plan will allow the
student‘s parents, school officials, and agency personnel to work together to make
these opportunities available.

Questions to Guide the Transition Process
Parents can begin thinking about transition planning as early as when the child enters
middle school. It can be helpful to start the process with a list of questions to act as a
springboard for discussion. These questions can be similar questions parents develop
when preparing for an IEP meeting. (See Chapter 5.) Some families hold family
meetings with siblings and the adolescent with ASD so that they can all share in the

                                      DRAFT April 2008

Below is a list of questions developed by a mother whose son has autism (Autism
Society of America, n.d.):

         What can your child do?
         What does your child like to do?
         What are your child‘s interest?
         What does your child need to explore?
         What does your child need to learn to reach his or her goals?
         What about college (four-year university, two-year community college),
          vocational education, or adult education?
         How about getting a job (competitive or supportive employment)?
         Where can your child go to find employment and training services?
         What transportation will your child use?
         Where will your child live?
         What living skills can your child do?
         How will your child make ends meet?
         Who will be involved in your child‘s life?
         Where will your child get health insurance?
 Many people think of adulthood in terms of getting a job and living independently, but
having friends and a sense of belonging in a community are also important. Transition
planning through the IEP process is designed to help students and parents plan for this
aspect of community life as well. To address these areas, additional questions have
been included to guide discussion and decision-making in this area.

         Are supports needed to encourage friendship?
         Do people in the community know your son or daughter?
         Are supports needed to structure time for recreation? Exercise?
         Does your child have any special interests that others may share as a hobby?
         Can you explore avenues for socializing such as religious affiliation or
          volunteer work?

Make sure the IEP team is reminded that the pattern of strengths and weaknesses in
ASD is unique. Don‘t design a plan that relies heavily on the individual‘s weaknesses.
Taking Action
It is also important that the transition process involve taking action even though it may
be a number of years before your child graduates. After identifying areas of interests
and setting goals, school personnel, parents and the student should take active steps to
meet those goals.

                                        DRAFT April 2008

For example, the VR representative arranges a job experience for a student with ASD
who has particularly sharp computer skills. The student is dismissed from school early a
few days a week and accompanied by a job coach to work at a data processing office.
In preparation for this job, the student‘s school program is designed to teach the student
appropriate office skills, office procedures, such as using a time clock, and social skills.
Another student, who prefers to be outdoors, would be more suited to work with a
community clean-up project than in an office. Her school program is designed to teach
landscaping and horticultural skills, as well as social and job skills. The team would
identify a job experience site that would allow the student to work in a local nursery. The
transition plan must be tailored to each individual‘s skills and preferences.
Experience with three or four different work activities during transition planning is helpful
in assessing a student‘s interests and capabilities while she is still in high school. For
some students transition activities will be designed to prepare them for further education.
The transition plan should address the student‘s goals for life after high school whatever
they may be.
The National Information Center for Children and Youth with Disabilities (NICHCY) has
published a Transition Summary series to help families and students with disabilities
focus on taking definite steps toward a successful transition. Below we have adapted a
portion of NICHCY Transition Summary page: This is an excellent site to visit for
more information besides transition.

Middle School: Start Transition Planning
      Involve your child in career exploration activities.
      Visit with a school counselor to talk about interests and capabilities.
      Have your child participate in vocational assessment activities.
      Along with your child, use information about interests and capabilities to make
       preliminary decisions about possible careers (academic versus vocational or a
      Along with your child, make use of books, career fairs, and people in the
       community to find out more about careers of interest.

                                       DRAFT April 2008

      Keep in mind that while self-determination needs to be considered, students with
       ASD may mature more slowly than others. Therefore, their timetables for
       independence may be longer. Beware of eliminating options too early based on
       academic and behavioral expectations they may not have achieved at the same
       age as their peers.

High School: Define Career/Vocational Goals
      Make sure the IEP includes a transition plan and work with school staff, and
       community agencies to define and refine the transition plan.
      Help identify and make sure your child takes high school courses that are
       required for entry into college, trade schools, or careers of interest. Also make
       plan for taking college entrance assessments, such as the ACT starting in her
       junior year of high school (These tests can be taken with the required
       modifications as outlined on her IEP).
      Help identify and make sure your child takes vocational programs offered in high
       school, if a vocational career is of interest.
      Encourage your child to become involved in early work experiences, such as job
       try-outs, summer jobs, volunteering, or part-time work.
      Reassess interests and capabilities, based on real-world or school experiences.
       (Is the career field still of interest? If not, redefine goals.)
      Make sure your child participates in ongoing vocational assessment and identify
       gaps of knowledge or skills that need to be addressed and address these gaps.

After High School: Achieve Your Goals
      If eligible for VR services, make sure your child works with a VR counselor to
       identify and pursue additional training or to secure employment (including
       supported employment) in her field of interest.
      If your child is not already receiving Supplemental Security Income, contact the
       local Social Security Administration office shortly before she turns 18. Family
       income is no longer considered in determining eligibility for benefits after the
       person‘s 18th birthday. If eligible for social security benefits such as Supplemental
       Security Income, find out how work incentives apply.

                                         DRAFT April 2008

      Contact you county board of MRDD to determine your child‘s eligibility for
       services, including Medicaid and waiver services. (See Chapter 6 for contact
       information.) Even if your son or daughter can be maintained on your medical
       insurance plan, Medicaid can be useful as supplemental insurance. In addition,
       Medicaid eligibility is required for many adult MRDD services.
      Contact agencies that can help, like disability-specific organizations such as the
       state or local chapter of the Autism Society of America. Ask about all services the
       student may be eligible for.
      Continue to work through the plan by following through on decisions to attend
       postsecondary institutions or obtain employment.

Education and Training Prior to Employment
      Have the IEP team and other disability support organization help identify
       postsecondary institutions (colleges, vocational programs in the community,
       trade schools, etc.) that offer training in a career of interest for your child.
      Identify the accommodations that would be helpful to support your child. Make
       sure that documentation is current on your child‘s IEP. This will support your
       child‘s request for accommodations at an educational institution. Find out if the
       educational institution makes, or can make, these accommodations. Some
       colleges such as Western Kentucky University, through the Kelly Autism Program,
       offer additional assistance for individuals with ASD.
      Write or call for catalogues, financial aid information, and request an application.
      Help identify and make sure your child takes any special tests (e.g., PSAT, SAT,
       ACT) necessary for entry. Deadlines to apply for this testing are generally earlier
       when accommodations are requested.
      Visit the institution, contact the office of disability services at the institution, and
       confirm that the accommodations needed for college coursework are available.

                                        DRAFT April 2008

Other Future Planning Issues
There are other aspects of planning for your child‘s future that are not covered in the
transition planning process through the IEP. These address issues like quality-of-life
support for your child if you are not available and legal issues such as guardianship,
and financial planning to protect government benefits.
Despite the growing number of persons with ASD in this country, fewer than 20% of
families have done any futures planning to address these issues. Like all of us, your
child with a disability will be an adult longer than she will be a child, so futures planning
is critical.
CareGuide@Home (2003) reported that at least one individual in 20% of U.S.
households is a caregiver either part-time or full-time. Planning for the futures of people
with disabilities is something parents and caregivers must address – and the sooner the
better. Whether the person with special needs is 4 or 40 years old, it is imperative that
families create a plan.
The following planning topics need to be addressed:
   1. Quality-of-life issues
   2. Legal
   3. Financial
   4. Government benefits
To guide decision-making when you are not available, discuss information regarding the
needs and desires of the child with ASD and compose a directive document. This
document should address lifestyle, financial, legal, and government-benefit issues.
Whether people with ASD function entirely on their own or need assistance, such a
directive can provide instruction for their daily care, as well as provide guidance for
unexpected contingencies. Some of the questions this directive should cover include:
      How would your child like to be bathed and dressed?
      Does your child have special dietary needs and requirements?
      Does your child have any chronic medical conditions? Who monitors your child‘s
      What leisure activities (music, computer, hobbies) does your child enjoy?
      What things can help your child live with dignity, quality, self-esteem and

                                       DRAFT April 2008

While most people realize they need to plan, for a variety of reasons many fail to do so.
Some believe the task is overwhelming and don‘t know where to find qualified
professionals who understand their needs and how to resolve their concerns. The cost
of professional services can also be an issue, as can privacy concerns.

Establishing an Advisory Team
As families begin to develop their plan, they should begin by identifying a group of
people who will act as an advisory team. This should include, when possible; family
members, the person with an ASD, an attorney, a financial advisor, caseworkers,
medical practitioners, teachers, therapists, and anyone involved in providing services to
the individual. Having input from each of them can help ensure that all parts of the plan
are coordinated and complete (Stevens, n.d.).

Letter of Intent
Lifestyle planning is a process in which a family records what they want for the future of
their loved one in a document called the ―letter of intent.‖ Although not a legal document,
it is as important as a will and a special needs trust. This letter of intent will include
information on a variety of important issues.

Quality of Life
Quality-of-life issues are those everyday things that need to be in place for each of us to
be comfortable in our daily lives. Addressing quality-of-life issues for our loved one with
ASD requires decisions and information regarding:
    Where the person will live
    Religious affiliation
    Continuing education programs desired
    Employment preferences
    Social activities preferred
    Medical care required
    Behavior management practices
    Advocacy and/or guardianship needs
    Trustees identified for financial planning purpose

                                        DRAFT April 2008

      Final arrangements desired
      Detailed instructions for assisting the person with the typical activities of daily
       living such as bathing, dressing, feeding, and toileting
      Description of any special ways of communicating that only the immediate family
       knows and understands are included
   TIP: Use videotape to record the individual performing activities of daily living,
   including communicating. Consider taping the individual having a meltdown and
   demonstrate the best ways of responding if that tends to be a relatively common

Should parental support no longer be available, imagine how much easier and less
traumatic it will be for the person with ASD and his or her care providers if they have
detailed instructions immediately available, rather than having to figure things out on
their own. What could take weeks or months to adjust to, could be shortened to a few
The ultimate goal of the letter of intent is to make the transition from parental care to
independent or supported living or moving in with other family members as easy as
possible, bearing in mind the comfort and security of the individual.

As each child approaches age 18, parents need to research guardianship issues and
decide which options are appropriate for their young adult. Guardianship is a legal
determination that involves your child‘s ability to make decisions regarding her own
affairs, including financial, medical, and educational decisions. If you do nothing when
your child turns 18, you legally lose the right to make decisions and sign legal
documents for your child. Determining guardianship can sometimes be a difficult
decision. Parents should discuss the issue with professionals and with other parents to
learn about all the implications.

                                       DRAFT April 2008

Estate Planning
―Who will care when you are no longer there?‖ is an overwhelming question that parents
of children with disabilities must address, but solutions and help are available.
Estate planning allows the family to state its wishes regarding the distribution of the
family‘s assets and to appoint executors to settle the estate. In conjunction with estate
planning, a trust should be established to provide supplemental funds for the individual
with ASD, but in a way that maintains the individual‘s eligibility for government benefits.
An estate planning team should include:
     Attorney
     Accountant
     Life underwriter/financial services provider
     Trust officer
A comprehensive estate plan should:
    Provide lifetime supervision and care if necessary
    Maintain government benefits
    Provide supplementary funds to help ensure a comfortable lifestyle
    Provide for management of funds
    Provide dignified final arrangements
    Avoid family conflict
Once you have decided to prepare a plan, find someone to help you or hire a
professional planner. Referral sources are available through governmental agencies,
organizations, or local support groups. Use a life-plan binder. Place all documents in a
single binder and notify caregivers/family where they can find it. At least once a year,
review and update the plan and modify legal documents as necessary.

Establishing a Trust
Government entitlements play a key role in the lives of many persons with autism
spectrum disorders by providing money and health care benefits under SSI
(Supplemental Security Income), SSDI (Social Security Disability Insurance), Medicaid,
and/or Medicare. A basic understanding of federal

                                       DRAFT April 2008

and state entitlement programs is essential in order to be sure that an individual gets all
that he or she is qualified to receive. That said, laws change, so it is crucial to hire
professionals with up-to-date legal expertise.

In establishing a trust, financial planning is used to determine the supplemental needs
of the person over and above the government benefits they may receive. First, a
monthly budget is established based on today‘s needs while projecting for the future.
Then, by using a reasonable rate of return on the principal, the family identifies how
much money is needed to fund the trust. The life expectancy of the person must be
considered and then the need projected into the future using an inflation factor.
Once this is done, the family must identify the resources to be used to fund the trust.
They may include stocks, mutual funds, IRAs, 401(k)s, real estate, and home or life
insurance. Professional management for investing the assets may be done by the
trustee, or the trustee may hire advisors.
Legal language has changed over time as state policies and legal decisions have
evolved. When carefully drawn according to strict legal guidelines, trusts have been
able to provide spending money to enhance the individual‘s daily life. Trusts can be a
valuable tool for families, regardless of the size of their estate.
Information about trusts and special needs trusts is available from the Kentucky Legal
Rights Service at the following web address:

You may also call Kentucky Legal Rights toll free in Kentucky at (800) 282-9181.
Make sure that the attorney and other planning professionals you hire have specific
expertise in planning for people with disabilities.

                                       DRAFT April 2008

Autism Society of America. (n.d.). Living with autism: Life after high school. In Autism
101. Retrieved January 10, 2007, from

Autism Society of America website:
CareGuide@Home. (2003). A profile of informal and family caregivers. In Care for
Caregivers. Retrieved January 10, 2007, from

Federal Register IDEIA Regulations, 2006; available at:

Last Will and Testament:
National Dissemination Center for Children with Disabilities (NICHCY) website:
Transition 101 with links to remainder of Transition Suite:
Kentucky Workforce Investment (2007).
Kentucky Department for Mental Health and Mental Retardation Services, (2007).
Kentucky Protection and Advocacy (2007). Website:

Kentucky Office of Vocational Rehabilitation (2007). Website:

Social Security Administration website:
Stevens, B. (n.d.). About you. Special Needs Planning. Retrieved January 10, 2007,

                                       DRAFT April 2008

                                     Chapter 9
     How and When to Tell a Child about his or Her
      Diagnosis of and autism spectrum disorder
I received my diagnosis of Asperger syndrome as an adult. This was a turning point in
my life, as it explained the relationships between what I had previously seen as a large
collection of strange behaviors, thoughts and preferences. Realizing that I was
neurologically different helped me to finally see myself as a whole person. It also gave
me a purpose and direction for my life. Advocating for respect and resources for adults
on the autism spectrum has become my primary interest. I am a student in the College
of Social Work at the University of Kentucky, and will graduate in May, 2008. I
coordinate the statewide Social Club for Teenagers with Asperger Syndrome through
Kentucky Partnership for Families and Children. I have presented information on autism
to a variety of groups and maintain an advocacy related blog, Asperger Square 8.

Statement of beliefs

Autism is not a detachable part of a person and it is not an outer shell behind which
someone entirely different hides, waiting to be set free. Autism is intrinsic and cannot be
removed. Even if it could, this would alter every aspect of the individual‘s being; he or
she would no longer be recognizable as the person you know. This is the very meaning
of the word ―pervasive.‖

There can, then, be no ―war on autism‖ without waging war on the person who is
autistic. This does not mean that I don‘t believe parents should do everything possible
to improve their autistic child‘s quality of life. But promises to ―cure‖ autism should be
viewed through a lens of skepticism. There are many schemes waiting to drain the bank
accounts of parents. Worse yet, some of these unproven ―treatments‖ may actually
cause harm to children. The best source of information is peer reviewed literature found
in established journals and written by scientists who have no financial interest in any
particular therapy or treatment.

Without a doubt, being viewed by one‘s family as a tragedy is harmful. Many people
believe that if a child does not respond verbally or show obvious signs of understanding
speech, that this indicates he is ―in his own world,‖ oblivious to what is said about him.
This is not true. Many, many reports exist from autistic people who have acquired
means of communication later in life, revealing the extent of harm done by this belief.
Lack of speech or of typical response does not indicate lack of understanding.

Autistic adults need to have a voice in all discussions concerning autism services. This
has not been the policy of the large, well-known ―charity‖ groups. A slogan borrowed
from the general Disability Rights Movement expresses this most succinctly, ―Nothing
About Us Without Us.‖ This is what I believe.

                                        DRAFT April 2008

Bev Harp

How and when to tell a child about his or her diagnosis of an autism spectrum disorder
is a frequently discussed topic on autism message boards. How young is too young?
Will the child understand? Will it add to his anxiety or help her understand her
differences? And what about explaining to others, siblings and other family members,
teachers, and peer groups? How does a parent go about helping others to understand
autism without creating stigma or contributing to false beliefs about the condition?

These are a few of the questions parents will need to answer for themselves before
approaching the subject with the child or teen who has been diagnosed. A growing
collection of literature addresses this subject and is available to aid in the discussions.
Included here are a few of the best resources for talking about the diagnosis.

For Children:

Elder, J and Thomas, M. (2005). Different Like Me: My Book of Autism Heroes. London:
       Jessica Kingsley Press.

This book introduces historical figures and other famous persons who fit the profile we
now know as autism. Included are Einstein, Newton and Kant as well as Andy Kaufman,
Andy Warhol and Temple Grandin. Suggested for ages 8 to 12, this book is also a joy to
read as an adult, and would make an ideal introduction to the autism spectrum for a
newly diagnosed child. Illustrated.

Elder, J and Thomas, M. (2007). Autistic Planet. London: Jessica Kingsley Press.

A rhyming book for the younger set, this one is reccommeded for ages 4 to 8. Autistic
Planet is a great book for building positive perspective from an early age, and would be
appropriate for siblings of ASD kids, too. Here Elder envisions a world where children
matter of factly prefer the weather report to cartoons, and where ―We don't do
something one time, when / We can do it over and over again!" Illustrated.

Faherty, C. (2004). Asperger’s: What Does it Mean to Me? Arlington, TX: Future

This is an excellent workbook for older children, pre-teens and young teenagers. The
sections are well formatted and designed to help the child explore issues of identity,
self-esteem, learning styles and more. At just over 300 pages, the book is thorough, a
great resource for teachers and parents as well. Foreword by Gary Mesibov.

Hoopman, K. (2006). All Cats Have Asperger Syndrome. London: Jessica Kingsley

                                        DRAFT April 2008

This is a small picture book which uses cats to illustrate some features of people with
Asperger syndrome. It‘s cute and well-intentioned if not terribly informative. If you are
going to buy just one kid‘s book about AS, this probably is not the one. However, it does
a good job of what it sets out to do, and would be a nice addition to a small library or to
leave on the coffee table for curious visitors to flip through.

Schnurr, R. (1999). Asperger’s, Huh?: A Child’s Perspective. Ontario: Anisor.

Some children with Asperger syndrome will relate to this first-person narrative, while
others will find its language too simplistic. While the publisher recommends this for ages
8 to 12, it is most appropriate for the younger end of that scale. It might be good for
siblings of the AS child.

Strand, V.(2006). I am Utterly Unique: Celebrating the Strengths of Children Asperger
      Syndrome and High Functioning Autism. Shawnee Mission, KS: Autism Asperger

This is an alphabet book for kids on the spectrum, ages 4 to 8. It presents a very
positive perspective, celebrating the strengths and unique qualities of autism with humor
and respect. 56 pages with color illustrations.

Welton, J., Newson, E., and Telford, J. (2004). Can I Tell You About Asperger
      Syndrome?: A Guide for Friends and Family. London: Jessica Kingsley Press.

Told from the perspective of a ten year old boy, this is a great little book for ―bridging the
gap‖ between AS kids and their peers or siblings. The author does an excellent job of
explaining how people with AS struggle to learn those things which seem so automatic
to others—body language, tone of voice, etc. Simple and direct without being
condescending. For ages 8-13.

For Teens:

Ledgin, N. (2002). Asperger’s and Self Esteem: Insight and Hope Through Famous
      Role Models. Arlington, TX: Future Horizons.

Many teens on the autism spectrum could use a good self-esteem booster. Ledgin
suggests that a number of scientists, artists and musicians have had much in common
with young people now diagnosed with Asperger syndrome. Autistic traits of Marie Curie
and Albert Einstein are discussed, as well as those of Glenn Gould and Mozart. For
teens and adults. Foreword by Temple Grandin.

Jackson, L. (2002). Freaks, Geeks and Asperger Syndrome. London: Jessica Kingsley

                                       DRAFT April 2008

Luke Jackson wrote this book when he was just 13 years old, and offers one of the best
and most thorough explanations to be found in the popular literature on AS. Jackson
offers his experience and advice to other teens on such topics as class work, bullying,
dating and hygiene. A great introduction for a young teen exploring the meaning of the
Asperger diagnosis from a peer who writes with confidence and self-acceptance.
Foreword by Tony Attwood.

For Teens and Adults:

Attwood, T. (2006). The Complete Guide to Asperger’s Syndrome. London: Jessica
       Kingsley Press.
More than an expanded version of Attwood‘s 1996 Asperger’s Syndrome, this book
combines up to date research and clinical experience with personal insights from people
on the spectrum. Chapters on marriage and career acknowledge the often ignored fact
of AS in adulthood. Written in accessible terms, this is a must have guide for family
members, therapists and educators by one of the world‘s most respected authorities on
the subject.

Attwood, T , Grandin, T., Bolick, T. and Faherty, C. (2006). Asperger’s and Girls.
      Arlington, TX: Future Horizons.

Asperger syndrome, like other conditions on the autism spectrum, is thought to occur
four times more frequently in boys than girls. Therefore, the bulk of the research so far
has focused on males. This book considers the questions specific to girls with AS as
well as the possibility that AS is frequently overlooked or misdiagnosed in this
population. Girls and young women with Asperger syndrome will appreciate this
opportunity to read the personal perspectives included here.

Murray, D. (2005). Coming Out Asperger: Diagnosis, Disclosure and Self-confidence.
      London: Jessica Kingsley Press.

This important book explores the impact of diagnosis and offers a number of strategies
for disclosing autism. Learn the art of the ―soft‖ disclosure and how to evaluate the level
of risk for disclosing in various situations. This is an anthology offering viewpoints from
professionals, family members and people on the autism spectrum.

Prince-Hughes, D. (2002). Aquamarine Blue 5: Personal Stories of College Students
      with Autism. New York: Swallow.

For the young adult considering college, here are some terrific first-hand reports of
autism at the university level. Addressing social, communication and sensory issues
from a variety of perspectives, each student describes his or her own experience with
college life. Editor Prince-Hughes has a PhD in anthropology and is autistic as well.

Grandin, T.(1986). Emergence: Labeled Autistic. New York: Warner.

                                       DRAFT April 2008

The first published book by the world‘s most famous autistic woman, Dr. Temple
Grandin. Grandin talks about her childhood, sensory issues and her mother‘s work to
have her included in mainstream schools.

Grandin, T.(1995). Thinking in Pictures: My Life with Autism. New York: Random House.

Further descriptions of life with autism from animal scientist Dr. Temple Grandin. This
book includes more details of Grandin‘s thought processes and her work to bring more
humane practices to the cattle industry.

Grandin, T. and Barron, S., (2005). The Unwritten Rules of Social Relationships.
      Arlington, TX: Future Horizons.

What are autistic people thinking? What do neurotypicals (non-autistic people) expect.
This is the book that explains it all. This is the key to understanding the ―other‖ across
the spectrum, separating the ―musts‖ from the ―shoulds‖ in social relationships, the
secret codes everyone ―just knows‖ but people with autism must be taught. Important.
Invaluable. Every family with an autistic member should have this one.

Kearns-Miller, J. (2003). Women from Another Planet?: Exploring Our Lives in the
      Universe of Autism. First Books Library.

This anthology, written by women on the spectrum, offers a range of insight you rarely
find in a single book. In addition to the individual chapters representing each author,
there is a section in which several of the women discuss their perspectives on issues of
importance to autistic women. In depth, varied and unique; highly recommended.

Newport, J. (2001). Your Life is Not a Label: A Guide to Living Fully with Autism and
     Asperger’s Syndrome. Arlington, TX: Future Horizons.

Practical advice from an adult with Asperger syndrome. Much of this book focuses on
basic life skills—riding a bus, opening a checking account, etc. Also included are
chapters on dating and marriage. Not everyone will appreciate the author‘s emphasis on
self-reliance and or his disdain for ―labels.‖ Newport also wrote the novel, Mozart and
the Whale.

O‘Neill, J.L. (1999). Through the Eyes of Aliens: A Book about Autistic People. London:
       Jessica Kingsley.
A book about acceptance by an autistic woman. The author views autism as a
neurological difference to be respected, not marginalized or eradicated. Read this only if
you love someone with autism and want to understand him or her better.

Williams, D. (1994). Nobody Nowhere: The Extraordinary Autobiography of an Autistic.
       New York: Times Books.

                                       DRAFT April 2008

This is a unique story of one autistic individual and her ways of coming to terms with a
world which often seems harsh and confusing. Williams has written a number of books
on autism and consults widely on related topics.

Zaks, Z. (2006). Life and Love: Positive Strategies for Autistic Adults. Shawnee Mission,
      KS: Autism Asperger Publishing.

Zosia Zaks shares her strategies on everything from grocery shopping with sensory
issues to dressing for job interviews. Step by step details on subjects like cleaning an
apartment will appeal to linear thinking Aspies who are struggle with executive
functioning problems.

Web Resource List

GRASP: Global and Regional Asperger Syndrome Partnership:

Autistic Self-Advocacy Network:

ANI: Autism Network International:

AANE: Asperger Association of New England

Autism Hub

Neurodiversity. com

Research Based Resources
Division TEACCH, University of North Carolina

Morton Ann Gernsbacher‘s Laboratory:

Yale Developmental Disabilities Clinic

                                      DRAFT April 2008

Aarons, M., & Gittens, T. (1999). The handbook of autism: A guide for parents and
       professionals (2nd ed.). New York: Routledge.
Amenta, C. A. (1992). Russell is extra special: A book about autism for children. New
       York: Magination Press.
American Psychiatric Association. (1994). Diagnostic and statistical manual of mental
       disorders (4th ed.). Washington, DC: Author.
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental
       disorders (4th ed., text revision). Washington, DC: Author.
Bailey, A., Phillips, W., & Rutter, M. (1996). Autism: Towards an integration of clinical,
       genetic, neuropsychological, and neurobiological perspectives. Journal of Child
       Psychology and Psychiatry, 37, 89-126.
Baron-Cohen, S., Allen, J., & Gillberg, C. (1992). Can autism be detected at 18 months?
       The needle, the haystack, and the CHAT. British Journal of Psychiatry, 161, 839-
Baron-Cohen, S., Cox, A., Baird, G., Swettenham, J., Nightingale, N., Morgan, K., Drew
       A., & Charman, T. (1996). Psychological markers in the detection of autism in
       infancy in a large population. British Journal of Psychiatry, 168, 158-163.
Barron, J., & Barron, S. (1992). There’s a boy in here. New York: Simon and Schuster.
Brown, T. (1995). Someone special just like you (2nd ed.). New York: Holt.
Buron, K. D. (2006). When my worries get too big!: A relaxation book for children who
       live with anxiety. Shawnee Mission, KS: Autism Asperger Publishing Company.
Bryson, S. E., Clark, B. S., & Smith, T. M. (1988). First report of a Canadian
       epidemiological study of autistic syndromes. Journal of Child Psychology and
       Psychiatry, 29, 443-445.

                                      DRAFT April 2008

Bryson, S. E. (1966). Brief report: Epidemiology of autism. Journal of Autism and
      Developmental Disorders, 26, 165-167.

Chamberlain, C., & Strode, R. (1999). The source for Down Syndrome. East Moline, IL:
Chance, P. (1997). First course in applied behavior analysis. Pacific Grove, CA:

Coleman, J. G. (1993). The early intervention dictionary. Bethesda, MD: Woodbine

Coleman, M. (1989). Young children with autism or autistic-like behavior. Infant and
     Young Children, 1(4), 22-31.

Coleman, M. (1989). Nutritional treatments currently under investigation in autism.
     Clinical Nutrition, 8, 210-212.

Cooper, J., Heron, T. E., & Heward, W. L. (2006). Applied behavior analysis (2nd ed.).
     New York: Macmillan.
Coucouvanis, J. (2005). Super skills: A social skills group program for children with
     Asperger Syndrome, high-functioning autism and related challenges. Shawnee
     Mission, KS: Autism Asperger Publishing Company.

D‘Eufemia, et al. (1996). Abnormal intestinal permeability in children with autism. Acta
      Pediactrica, 85, 1076-1079.

Edwards, D., & Bristol, M. (1991, November). Autism: Early identification and
     management in family practice. American Family Physician, 1755-1764.

Fombonne, E. (2003). Epidemiological surveys of autism and other pervasive
     developmental disorders: An update. Journal of Autism Developmental Disorder,
     33, 365-382.

Gerlach, E. K. (2003). Autism treatment guide (3rd ed.). Eugene, OR: Four Leaf Press.

Gillberg, C., & Steffenburg, S. (1987). Outcome and prognostic factors in autism and
       similar conditions: A population based study of 46 cases followed through
       puberty. Journal of Autism and Developmental Disorders, 17, 273-287.

Gillberg, C., & Wahlstrom, J. (1975). Chromosome abnormalities in infantile autism and
       childhood psychoses: A population study of 66 cases. Developmental Medicine &
       Neurology, 27, 293-304.

                                      DRAFT April 2008

Gilliam, J. E. (1995). Gilliam Autism Rating Scale. Austin, TX: Pro-Ed.

Gordon, A. G. (1992). Debate and argument: Interpretation of auditory impairment and
     markers for brain damage in autism. Journal of Child Psychology and Psychiatry,
     34(1), 587-592.

Grandin, T. (1995). Thinking in pictures and other reports from my life with autism. New
      York: Doubleday.

Grandin, T., & Scarinano, M. (1986). Emergence: Labeled autistic. Novato, CA: Arena

Green, G. (1996). Evaluating claims about treatments for autism. In C. Maurice, G.
      Green, & S. Luce (Eds.), Behavioral interventions for young children with autism:
      A manual for parents and professionals (pp. 15-27). Austin, TX: Pro-Ed.

Green, G. (1996). Early intervention for autism. What does the research tell us? In C.
      Maurice, G. Green, & S. Luce (Eds.), Behavioral interventions for young children
      with autism: A manual for parents and professionals (pp. 29-44). Austin, TX: Pro-

Greenspan, S., & Weider, S. (1998). The child with special needs. Reading, MA:

Greenspan, S. I. (1992). Reconsidering the diagnosis and treatment of very young
     children with autistic spectrum or pervasive developmental disorder. Zero to
     Three, 13(2), 1-9.

Guralnick, M. (Ed.). (1967). The effectiveness of early intervention. Baltimore: Brookes.
Harris, S. L., & Glasberg, B. A. (2003). Siblings of children with autism (2nd ed.). New
       York: Pocket Books.

Hart, C. (1993). A parent’s guide to autism: Answers to the most common questions.
       New York: Pocket Books.

Heinrichs, R. (2003). Perfect targets – Asperger Syndrome and bullying: Practical
       solutions for surviving the social world. Shawnee Mission, KS: Autism Asperger
       Publishing Company.

Indiana Resource Center for Autism. (1996). Autism training sourcebook. Bloomington:

Izeman, S. (1995). Embedding teaching for young children with autism into daily
     activities. Early Intervention, 6(2), 1-3.

                                       DRAFT April 2008

Janzen, J. (2003). Understanding the nature of autism: A guide to autism spectrum
      disorders (2nd ed.). San Antonio, TX: Therapy Skill Builders.

Katz, I., & Rituo, E. (1993). Joey and Sam. Northridge, CA: Real Life Story Books.

Katz, L. C., & Shatz, C. J. (1996, November 15). Synaptic activity and the construction
       of cortical circuits. Science, 274(5290), 1133-1138.

Koegel, L. K., Koegel, R. L., & Dunlap, G. (Eds.). (1996). Positive behavioral support.
     Baltimore: Brookes.

Konstantareas, M. M., & Homatidis, S. (1987). Brief report: Ear infections in autistic and
      normal children. Journal of Autism and Developmental Disorders, 17, 585-594.

Krantz, P. J., & McClannahan, L. E. (1993). Teaching children with autism to initiate to
      peers: Effects of a script-fading procedure. Journal of Applied Behavior Analysis,
      26, 121-132.

Krug, D. A., Arick, J. R., & Almond, P. J. (1980). Behavior checklist for identifying
      severely handicapped individuals with high levels of autistic behavior. Journal of
      Child Psychology and Psychiatry, 21, 221-229.

Lord, C., Rutter, M., & Le Couteur, A. (1994). Autism Diagnostic Interview-Revised: A
       revised version of a diagnostic interview for caregivers of individuals with
       possible pervasive developmental disorders. Journal of Autism and
       Developmental Disorders, 24, 659-685.

Lovaas, I. O. (1987). Behavioral treatment and normal educational and intellectual
      functioning in young autistic children. Journal of Consulting and Clinical
      Psychology, 55(1), 3-9.

Lovaas, I. O. (1993). The development of a treatment-research project for
      developmentally disabled and autistic children. Journal of Applied Behavior
      Analysis, 26, 617-630.

Lovaas, I. O. (1981). Teaching developmentally disabled children: The ME book. Austin,
      TX: Pro-Ed.

Maurice, C. (1998). Let me hear your voice (2nd ed.). New York: Alfred A. Knopf.

Meyers, D. (Ed.). (1995). Uncommon fathers reflections on raising a child with a
     disability. Bethesda, MD: Woodbine House.

McEachin, J. J., Smith, T., & Lovaas, I. O. (1993). Long term outcomes for children who
     received early intensive behavioral treatment. American Journal on Mental
     Retardation. 97(4), 359-372.

                                       DRAFT April 2008

Myles, B. S. (2005). Children and youth with Asperger Syndrome: Strategies for
      success in inclusive settings. Thousand Oaks, CA: Corwin.

Myles, B. S., Bock, S. J., & Simpson, R. L. (2000). Asperger Syndrome Diagnostic
      Scale. Austin, TX: Pro-Ed.

Nebraska Developmental Disabilities Planning Council, Nebraska Department of Health
      and Human Services.Nebraska. (2002). Nebraska autism parent booklet. Lincoln:

Noonan, M. J., & McCormick, L. (1993). Early intervention in natural environments.
       Belmont, CA: Brooks/Cole.
Park, C. C. (1993). The siege: The first eight years with an autistic child. Boston: Little
Parrot, J. M., Kamath, S. K., Fujiura, G. T., & Winnega, M. A. (1995). Dietary intake and
       growth patterns of children with autism. FASEB Journal, 9, Abstract # 2572, p.

Powers, M. D. (Ed.). (2000). Children with autism: A parent’s guide (2nd ed.). New York:
     Woodbine House.

Rakic, P. (1995). The development of the frontal lobe: A view from the rear of the brain.
       Advances in Neurology, 66, 1-6.

Rakic, P., Bourgeois, J. P., & Goldman-Rakic, P. S. (1994). Synaptic development of
       the cerebral cortex: Implications for learning, memory, mental illness. Progress in
       Brain Research, 102, 227-243.

Rapin, I. (1997). Autism. New England Journal of Medicine, 337(2), 97-1-4.
Rimland, B. (1991). Dimethylglycine (DMG) – A non-toxic metabolite, and autism. San
      Diego, CA: Institute for Child Behavior Research, Publication #110.

Rimland, B. (1993, September). Form letter regarding high dosage Vitamin B6 and
      magnesium therapy for autism and related disorders. Autism Research
      Publication, 39E.

Rimland, B., & Edelson, S. (1995). Brief report: A pilot study of auditory integration
      training in autism. Journal of Autism and Developmental Disorders, 25, 61-70.

Rogers, S. J. (1996). Brief report: Early intervention in autism. Journal of Autism and
      Developmental Disorders, 26, 243-246.

Schopler, E., & Mesibov, G. (Eds.). (1995). Learning and cognition in autism. New York:
      Springer/Plenum Press.

                                       DRAFT April 2008

Schopler, E., Reichler, R. J., & Renner, B. R. (1986). The Childhood Autism Rating
      Scale (CARS) or diagnostic screening and classification of autism. New York:

Schreibman, L. (1988). Autism. Newbury Park, CA: Sage.

Schulze, C. B. (1993). When snow turns to rain: One family’s struggle to solve the riddle
      of autism. Rockville, MD: Woodbine House.

Siegel, B. (1998). The world of the autistic child: Understanding and treating autistic
       spectrum disorder (2nd ed.). New York: Oxford University Press.

Squired, J., & Bricker, D. (2006). An activity based approach to developing young
      children’s social emotional competence. Baltimore: Brookes.

Thompson, M. (1996). Andy and his yellow frisbee. Bethesda, MD: Woodbine House.
Tuchman, R. F., & Rapin, I. (1997). Regression in pervasive developmental disorders
     seizures and epileptiform electroencephalogram correlates. Pediatrics, 99, 560-

Tuchman, R. F. (1994). Epilepsy, language, and behavior: Clinical models in childhood.
     Journal of Child Neurology, 9(1), 95-102.

Van Gent, T., Heijnen, C. J., & Treffers, P.D.A. (1997). Autism and the immune system.
     Journal of Child Psychology and Psychiatry, 38, 337-349.

Volkmar, F. R., & Nelson, D. S. (1990). Seizure disorders in autism. Journal of the
     American Academy of Child and Adolescent Psychiatry, 29, 127-129.

Williams, D. (1992). Nobody nowhere: The extraordinary autobiography of an autistic.
       New York: Times Books.

Williams, D. (1994). Somebody somewhere: Breaking free from the world of autism.
       New York: Times Books.

Williams, M., & Shellenberger, S. (1994). How does your engine run? The alert program
       for self-regulation. Albuquerque, NM: Therapy Works.

Carr, E. G., Levin, L., McConnachies, G., Carlson, J. I., Kemp, D. C., & Smith, C. E.
       (1994). Communication-based intervention for problem behavior: A user’s guide
       for producing positive change. Baltimore: Brookes.

                                      DRAFT April 2008

Freeman, S., & Drake, L. (1998). Teach me language: A language manual for children
     with autism, Asperger’s Syndrome, and related developmental disorders. Langley,
     BC: SKF Books.

Frost, L., & Bondy, A. (2004). PECS: The Picture Exchange System training manual (2nd
       ed.). Westbury, NJ: Pyramid Educational Consultants.

Grandin, T., & Scarinano, M. (1986). Emergence labeled autistic. Novato, CA: Arena

Gray, C. (2000). The new Social StoryTM book illustrated edition. Arlington, TX: Future
Hodgdon, L. (1995, 1996). Visual strategies for improving communication: Volume 1:
      Practical supports for school and home. Troy, MI: Quirk Roberts.

Kranowitz, C. S., & Silver, L. B. (1998). The out-of-sync child: Recognizing and coping
     with sensory integration dysfunction. New York: Skylight Press.

Myles, B. S., Cook, K. T., Miller, N. E., Rinner, L., & Robbins, L. (2000). Asperger
      Syndrome and sensory issues: Practical solutions for making sense of the world.
      Shawnee Mission, KS: Autism Asperger Publishing Company.

Moyes, R. A. (2001). Incorporating social goals in the classroom. London: Jessica

Prizant, B. M., Schuler, A. L., & Wetherby, A. M. (2005). Enhancing language and
       communication: Theoretical Foundations. In D. Cohen & F. Volkmar (Eds.),
       Handbook of autism and pervasive developmental disorders (3rd ed.). New York:

Quill, K. A. (1995). Teaching children with autism: Strategies to enhance communication
        and socialization. New York: Delmar.

Quill, K. A. (2002). Do-watch-listen-say: Social and communication intervention for
        children with autism. Baltimore: Brookes.

Sussman, F. (1999). More than words: Helping parents promote communication and
     social skills in children with autism spectrum disorders. Toronto, ONT, Canada:
     The Hanen Centre.

Sensory Integration
Anderson, E., & Emmons, P. (1996). Unlocking the mysteries of sensory dysfunction: A
      resource for anyone who works with or lives with, a child with sensory issues.
      Arlington, TX: Future Horizons.

                                        DRAFT April 2008

Ayers, A. J. (1979). Sensory integration and the child. Los Angeles: Western
       Psychological Services.

Bundy, A. C., Lane, S. J., Fisher, A. G., & Murray, El. A. (2002) Sensory integration:
      Theory and practice (2nd ed.). Philadelphia: F.A. Davis.

Hannaford, C. (1995). Smart moves. Arlington, VA: Great Ocean.

Heller, S. (2002). Too loud, too bright, too fast, too tight: What to do if you are sensory
       defensive in an overstimulating world. New York: Harper Collins.

Kranowitz, C. S., & Silver, L. B. (1998). The out-of-sync child: Recognizing and coping
     with sensory integration dysfunction. New York: Skylight Press.

Kranowitz, C. S., Sava, D. I., Haber, E., & Balzer-Martin, L. (2001). Answers to
     questions teachers ask about sensory integration. Las Vegas, NV: Sensory

Kranowitz, C. S. (2003). The out-of-sync child has fun: Activities for kids with sensory
     integration dysfunction. New York: Pedigree.

Kranowitz, C. S. (1995). 101 activities for kids in tight spaces: At the doctor’s office, on
     car, train, and plane trips, home sick in bed. New York: St Martin‘s Press.

Miller-Kuhaneck, H. (2002). Autism: A comprehensive occupational therapy approach.
       Orlando, FL: Harcourt School.

Miller-Kuhaneck, H. (2001). Combining intervention approaches in occupational therapy
       for children with pervasive developmental disorders. AOTA Continuing Education.

Myles, B. S., Cook, K. T., Miller, N. E., Rinner, L., & Robbins, L. (2000). Asperger
      Syndrome and sensory issues: Practical solutions for making sense of the world.
      Shawnee Mission, KS: Autism Asperger Publishing Company.

Schneider, C. C. (2001). Sensory secrets: How to jump-start learning in children. Akroyo,
      CA: Concerned Communications.

Williams, M., & Shellenberger, S. (1994). How does your engine run? The alert program
       for self-regulation. Albuquerque, NM: Therapy Works.

Attwood, T. (1997). Asperger’s Syndrome: A guide for parents and professionals.
      London: Jessica Kingsley.

                                      DRAFT April 2008

Baron-Cohen, S., & Howlin, P. (1998). Teaching children with autism to mind-read: A
      practical guide for teachers and parents. New York: John Wiley & Son.

Begun, R. W. (1996). Ready-to-use social skills lessons and activities. Port Chester,
     NY: National Professional Resources.

Beyer, J., & Gammeltoft, L. (2000). Autism and play. London: Jessica Kingsley.

Duke, M. L., Nowicki, S., & Martin, E. L. (1998). Teaching your child the language of
      social success. Atlanta, GA: Peachtree.

Giangreco, M. F. (1997). Quick guides to inclusion. Baltimore: Brookes.

Gray, C. (2000). The new Social StoryTM book illustrated edition. Arlington, TX: Future

Hodgdon, L. (1995, 1996). Visual strategies for improving communication Volume 1:
     Practical supports for school and home. Troy, MI: Quirk Roberts Publishing.

Johnson, A. M. (2002). More social skills stories. Solana Beach, CA: Mayer-Johnson.

Maurice, C., Green, G., & Luce, S. C. (1996). Behavioral intervention for young children
      with autism: A manual for parents and professionals. Austin, TX: Pro-Ed.

Myles, B. S., Trautman, M. L., & Schelvan, R. L. (2004). The hidden curriculum:
      Practical solutions for understanding unstated rules in social situations. Shawnee
      Mission, KS: Autism Asperger Publishing Company.

Moyes, R. A. (2001). Incorporating social goals in the classroom. London: Jessica

Quill, K. A. (1995). Teaching children with autism: Strategies to enhance communication
        and socialization. New York: Delmar.

Reese, P. B., & Challenner, N. C. (2001). Autism and PDD adolescent social skills
     lessons. East Moline, IL: LinguiSystems.

Savner, J. L., & Myles, B. S. (2000). Making visual supports: Autism and Asperger
     Syndrome. Shawnee Mission, KS: Autism Asperger Publishing Company.

Myles, B. S., & Adreon, D. (2001). Asperger Syndrome and adolescence: Practical
      solutions for school success. Shawnee Mission, KS: Autism Asperger Publishing

                                       DRAFT April 2008

Myles, B. S., & Southwick, J. (2005). Asperger Syndrome and difficult moments:
      Practical solutions for tantrums, rage, and meltdown (2nd ed.). Shawnee Mission,
      KS: Autism Asperger Publishing Company.

Susnik, J. (2002). Who, what, and why. Solana Beach, CA: Mayer-Johnson, Inc.

Wing, L. (2002). The autistic spectrum: A guide for parents and professionals. London:
Atwood, T. (1998). Asperger’s Syndrome: A guide for parents and professionals.
     London: Jessica Kingsley.

Durand, M. (2002). Sleep better: A guide to improving sleep for children with special
     needs. Baltimore: Brookes.

Hodgdon, L. (1995, 1996). Visual strategies for improving communication Volume 1:
     Practical supports for school and home. Troy, MI: Quirk Roberts Publishing.

Jones, M. (1998). Within our reach: Behavior prevention and intervention strategies for
      learners with mental retardation and autism (DDD Prism Series, Vol. 1). Arlington,
      VA: Council for Exceptional Children.

Koegel, L. K., Koegel, R. L., & Dunlap, G. (Eds.). (1996). Positive behavioral support:
     Including people with difficult behavior in the community. Baltimore: Brookes.

Kranowitz, C. S., & Silver, L. B. (1998) The out-of-sync child: Recognizing and coping
     with sensory integration dysfunction. New York: Skylight Press.

Lovaas, O. I. (1981). Teaching developmentally disabled children: The ME Book. Austin,
      TX. Pro-Ed.

Lovaas, O. I. (2002). Teaching individuals with developmental delays. Austin, TX: Pro-

Lovaas, O. I. (1987). Behavioral treatment and normal educational and intellectual
      functioning in young autistic children. Journal of Consulting and Clinical
      Psychology, 55, 3-9.

Maurice, C., Green, G., & Luce, S. C. (1996). Behavioral intervention for young children
        with autism: A manual for parents and professionals. Austin, TX: Pro-Ed.
Miller, L. K. (1997). Principles of everyday behavior analysis (3rd ed.). Pacific Grove, CA:

Powers, M. D. (Ed.). (2000). Children with autism: A parent’s guide (2nd ed.). New York:
     Woodbine House.

                                       DRAFT April 2008

Ruttenburg, B. A., Kalish, B. I., Wenar, C., & Wolf, E .G. (1977). Behavior rating
      instrument for autistic and other atypical children (2nd ed.). Philadelphia:
      Developmental Center for Autistic Children.

Schopler, E., & Mesibov, G. (Eds.). (1994). Behavioral issues in autism. New York:
      Springer/Plenum Publishers.

Schopler, E. (1995). Parent survival manual: A guide to crisis resolution in autism and
      related developmental disorders. New York: Springer/Plenum Publishers.

Myles, B. S., & Southwick, J. (2005). Asperger Syndrome and difficult moments:
      Practical solutions for tantrums, rage and meltdowns (2nd ed.). Shawnee Mission,
      KS: Autism Asperger Publishing Company.

Savner, J. L., & Myles, B. S. (2000). Making visual supports: Autism and Asperger
     Syndrome. Shawnee Mission, KS: Autism Asperger Publishing Company.

Waltz, M. (1999). Pervasive developmental disorders: Finding a diagnosis and getting
       help for parents and patients with PDD-NOS and Atypical PDD. Sebastopol, CA:

Wheeler, M. (1998). Toilet training for individuals with autism and related disorders: A
     comprehensive guide for parents and teachers. Arlington, TX: Future Horizons,
There are many useful resources for providing sexuality training to children and adults
with developmental disabilities, including books and videotapes. Most of the tools are
useful as clear and sometimes graphic descriptions of sexual functions and norms.
Fegan, L., Rauch, A., & McCarthy, W. (1993). Sexuality and people with intellectual
       disability (2nd ed.). Baltimore: Brookes.
Grandin, T. (1995). Thinking in pictures, and other reports from my life with autism. New
       York: Vintage Publishing.
Hingsburger, D. (1994). I openers: Parents ask questions about sexuality and their
       children with developmental disabilities. Family Support Institute Press, 22, 2.
Hingsburger, D. (1990a). I contact: Sexuality and people with developmental disabilities.
       Bear Creek, NC: Psych-Media.
Hingsburger, D. (1990b). I to I: Self-concept and people with developmental disabilities.
       Bear Creek, NC: Psych-Media.
Hingsburger, D. (1995). Just say know! Richmond Hill, ONT: Diverse City Press.
Kempton, W. (1993). Socialization and sexuality. Santa Barbara, CA: Stanfield
Mirenda, P., & Erickson, K. (2000). Augmentative communication and literacy. In A.
       Wetherby & B. Prizant (Eds.), Autism spectrum disorders (pp. 333-368).
       Baltimore: Brookes.

                                    DRAFT April 2008

Monat-Haller, R. K. (1992). Understanding and expressing sexuality: Responsible
      choices of individuals with developmental disabilities. Baltimore: Brookes.
Mortlock, J. (1993, November). The socio-sexual development of people with autism
      and related learning disabilities. Presented Inge Wakehurst study weekend,
      August 24, 1994. Chester, UK.

                                      DRAFT April 2008

Schuler, A., & Wolfberg, P. (2000). Promoting peer play and socialization: The art of
       scaffolding. In A. Wetherby & B. Prizant (Eds.), Autism spectrum disorders (pp.
       251-278). Baltimore: Brookes.
Sgroi, S. (1989). Vulnerable populations. Lexington, MA: Lexington.

Summers, J. A. (1996). The right to grow up. Baltimore: Brookes.

California Departments of Education and Developmental Services. (1997). Best
       practices for designing and delivering effective programs for individuals with
       autistic spectrum disorders. Sacramento, CA: Author.
Chance, P. (2006). Learning and behavior: Activity learning edition (with workbook).
       Stamford, CT: Thomson/Wadsworth.
Cooper, J. O., Heron, T. E., & Heward, W. L. (2006). Applied behavior analysis (2nd ed.).
       New York: Macmillan.
Fouse, B. (1996). Creating a “Win-Win IEP” for students with autism. Arlington, TX:
       Future Horizons.
Harris, S. L., & Handleman, J. S. (2000). Preschool education programs for children
       with autism (2nd ed.). Austin, TX: Pro-Ed.
Krantz, P. J., & McClannahan, L. E. (1993). Teaching children with autism to initiate to
       peers: Effects of a script-fading procedure. Journal of Applied Behavior Analysis,
       26, 121-132.
Myles, B. S. (2005). Children and youth with Asperger Syndrome: Strategies for
       success in inclusive settings. Thousand Oaks, CA: Corwin.
Myles, B. S., Adreon, D., & Gitlitz, D. (2006). Simple strategies that work! Helpful hints
       for all educators of students with Asperger Syndrome, high-functioning autism,
       and related disabilities. Shawnee Mission, KS: Autism Asperger Publishing

Circles I, II, and III. Intimacy and Relationships (teaches appropriate social distance
       skills), Stop Abuse (an abuse prevention curriculum), and Safer Ways (HIV/AIDS
       prevention education). Leslie Walker-Hirsch, M.Ed. and Marklyn Champagne,
       R.N., M.S.W.

                                      DRAFT April 2008

Life Horizons I and II, Sexuality Education for Persons with Severe Developmental
      Disabilities, Life Facts – Sexuality and Sex Abuse Prevention.
These curricula are available from:
James Stanfield Co. Inc.
Drawer 189
PO Box 41058
Santa Barbara, CA 93140
Phone: (800) 421-6534; Fax: (805) 897-1187
YAI’s Relationship Series: Friendship Series, Boyfriend/Girlfriend Series, and Sexuality
YAI/National Institute for People with Disabilities
Tapes and Publications
460 West 34th Street
New York, NY 10001-2382
Phone: (212) 273-6517 fax: (212) 629-4113

Assistive Technology
Wisconsin Assistive Technology Integration Project, Penny Reed, Director Assessing
       Students‘ Needs for Assistive Technology (ASNAT),, assistive
       technology tools.
AT Tools and Strategies Assessment Kit for Students with Autism Spectrum Disorder
       (ASD), The Wisconsin Assistive Technology Initiative (
Project Team: Technology to Educate Students with Autism, Johns Hopkins University -
       Center for Technology in Education, 6740 Alexander Bell Drive, Suite 302,
       Columbia, MD 21046. Phone: (410) 312-3800; fax (410) 312-3868

Community Transition
Baer, R., McMahan, R., & Flexer, R. (1999). Transition planning: A guide for parents
      and professionals. Kent, OH: Kent State University.

Baer, R., Simmons, T., & Flexer, R. (1996). Transition practice and policy compliance in
Bolles, R. N. (1995). What color is my parachute: A practical manual for job hunters and
       career changers. Berkeley, CA: Ten Speed Press.

                                        DRAFT April 2008

Clark, G. M., & Patton, J. R. (1997). Transition planning inventory: Administration and
       resource guide. Austin, TX: Pro-Ed.
Crites, J. (1978). Theory and research handbook for the Career Maturity Inventory.
       Monterey, CA: McGraw Hill.
Department of Labor. (1991). Secretary of Labor’s Commission on Achieving Necessary
       Skills. Washington, DC: Author.
DeStefano, L., & Wermuth, T. R. (1992). IDEA (P.L. 101-476): Defining a second
       generation of transition services. In F. R. Rusch, L. DeStefano, J. Chadsey-
       Rusch, L. A. Phelps, & E. Szymanski (Eds.), Transition from school to adult life:
       Models linkages, & policy. Sycamore, IL: Sycamore.
Flexer, R., Simmons, T., Luft, P., & Baer, R. (2001). Transition planning for secondary
       students with disabilities. Upper Saddle River, NJ: Prentice-Hall, Inc.
Gallivan-Fenlon, A. (1994). Their senior year: Family and service provider perspectives
       on the transition from school to adult life for young adults with disabilities. Journal
       of the Association for Persons with Severe Handicaps, 19, 11-23.
Giangreco, M. F., Cloninger, C. J., & Iverson, V. S. (1992). Choosing options and
       accommodations for children: A guide to planning inclusive education. Baltimore:
Grigal, M., Test, D. W., Beattie, J., & Wood, W. M. (1997). An evaluation of transition
       components of individualized education programs. Exceptional Children, 63, 357-
Hagner, D., & Dileo, D. (1993). Working together: Workplace culture, supported
       employment, and persons with disabilities. Cambridge, MA: Brookline Books.
Halpern, A. S. (1985). Transition: A look at the foundations. Exceptional Children, 51,
Halpern, A. S., Herr, C. M., Wolf, N. K., Lawson, J. D., Doren, B., & Johnson, M. D.
       (1997). NEXT S.T.E.P.: Student transition and educational planning. Austin, TX:
Holtz, K., Ziegert, A., & Baker, C. (2004). Life journey through autism: An educator’s
       guide. Silver Springs, MD: Organization for Autism Research, Danya
       International. Also available at
Individuals with Disabilities Education Act Amendments of 1997 (P.L. 105-17).
Individuals with Disabilities Education Act of 1990, 20 U.S.C. 1400-1485 (1990).
Krom, D. M., & Prater, M. A. (1993). IEP goals for intermediate-aged students with mild
       mental retardation. Career Development for Exceptional Individuals, 16, 87-95.

                                       DRAFT April 2008

LaPlante, M., Kennedy, J., Kaye, H. S., & Wenger, B. (1996). Abstract 11: Disability and
        employment. San Francisco: Disability Statistics Center.
Lombard, R. C., Hazelkorn, M. N., & Neubert, D. A. (1992). A survey of accessibility to
        secondary vocational education programs and transition services for students
        with disabilities in Wisconsin. Career Development for Exceptional Individuals, 15,
Martin, J. E., Huber Marshall, L., Maxson, L. L., & Jerman, P. (1996). Self-directed IEP.
        Longmont, CO: Sopris West.
Menchetti, B., & Piland, V.C. (1998). A person-centered approach to vocational
        evaluation and career planning. In F. R. Rusch & J. Chadsey (Eds.), Beyond high
        school: Transition from school to work. Belmont, CA: Wadsworth Publishing.
Miller, R. J., Lombard, R. C., & Corbey, S. A. (2007). Transition assessment: Planning
        transition and IEP development for youth with mild to moderate disabilities.
        Boston: Allyn & Bacon.
Mount, B. (1994). Benefits and limitations of personal futures planning. In J. Bradley, J.
        W. Ashbaugh, & B. C. Blaney (Eds.), Creating individual supports for people with
        developmental disabilities (pp. 97-98). Baltimore: Brookes.
Mount, B., & Zwernick, C. (1988). It’s never too early, it’s never too late: A booklet about
        personal futures planning (Publication No. 421-88-109). St. Paul, MN: Governor‘s
        Planning Council on Developmental Disabilities.
Myers, L. B., & McCauley M. H. (1985). Manual: A guide to the development and use of
        the Myers-Briggs Type Indicator. Palo Alto, CA: Consulting Psychologists Press.
Kentucky Rehabilitation Services Commission. (1997, August). Transition guidelines
        and best practices. Columbus, OH: Author.
Parent, W. (2000, July 20). The work incentive and transition network: SSI and
        transition-aged youth. Eleventh Annual APSE Conference, The Rural Institute on
        Disabilities, The University of Montana.
Powers, L. E., Sowers, J., Turner, A., Nesbitt, M., Knowles, E., & Ellison, R. (1996).
        TAKE CHARGE: A model for promoting self-determination among adolescents
        with challenges. In L.E. Powers, G.H.S. Singer, & J. Sowers (Eds.), On the road
        to autonomy: Promoting self-competence for children and youth with disabilities
        (pp. 291-322). Baltimore: Brookes.
Pumpian, I., Campbell, C., & Hesche, S. (1992). Making person-centered dreams come
        true. Resources, 4(4), 1-6.
Repetto, J. B., & Correa, V. I. (1996). Expanding views on transition. Exceptional
        Children, 62, 551-563.

                                      DRAFT April 2008

Rojewski, J. W. (1993). Theoretical structure of career maturity for rural adolescents
       with learning disabilities. Career Development for Exceptional Individuals, 16, 39-
Simmons, T., & Baer, R. (1996). What I want to be when I grow up: Career planning. In
       C. Flexer, D. Wray, R. Leavitt, & R. Flexer (Eds.), How the student with hearing
       loss can succeed in college: A handbook for students, families, and professionals.
       Washington, DC: Alexander Graham Bell Association for the Deaf.
Stanford Research Institute (SRI) International. (1990). National longitudinal transition
       study of special education students. Washington, DC: The Office of Special
       Education Programs.
Stanford Research Institute (SRI) International. (1992). What happens next? Trends in
       postschool outcomes of youth with disabilities. Washington, DC: The Office of
       Special Education Programs.
Steere, D., Wood, R., Panscofar, E., & Butterworth, J. (1990). Outcome-based school-
       to-work transition planning for students with disabilities. Career Development for
       Exceptional Individuals, 13, 57-69.
Stowitschek, J., & Kelso, C. (1989). Are we in danger of making the same mistakes with
       ITP‘s as were made with IEP‘s? Career Development for Exceptional Individuals,
       12, 139-151.
Super, D., Thompson, A., Lindeman, R., & Myer, R. (1981). A Career Development
       Inventory. Palo Alto, CA: Consulting Psychological Press.
Turnbull, A. P., & Turnbull, H. R. (1988). Toward great expectations for vocational
       opportunity: Family professional partnerships. Mental Retardation, 26, 337-342.
Turner, L. (1996). Selecting a college option: Determining the best fit. In C. Flexer, D.
       Wray, R. Leavitt, & R. Flexer (Eds.), How the student with hearing loss can
       succeed in college: A handbook for students, families, and professionals.
       Washington, DC: Alexander Graham Bell Association for the Deaf.
U.S. Department of Education, Office of Special Education Programs. (1998). Data
       analysis system (DANS). Cited in Twentieth Annual Report to Congress on the
       Implementation of the Individuals with Disabilities Education Act. Washington,
       DC: Author.
Van Reusen, A. K., & Bos, C. S. (1990). I plan: Helping students communicate in
       planning conferences. Teaching Exceptional Children, 22, 30-32.
Vandercook, T., York, J., & Forest, M. (1989). The McGill Action Planning System
       (MAPS): A strategy for building the vision. Journal of the Association for Persons
       with Severe Handicaps, 14, 205-215.
Virginia Commonwealth University, Rehabilitation Research & Training Center on
       Workplace Supports. (Phone 804-828-1851; email ).

                                       DRAFT April 2008

Ward, M. J., & Halloran, W. J. (1989). Transition to uncertainty: Status of many school
      leavers with severe disabilities. Career Development for Exceptional Individuals,
      12, 71-80.
Weaver, R., & DeLuca, J. R. (1987). Employability Life Skills Assessment: Ages 14-21.
      Dayton, OH: Miami Valley Special Education Center.
Wehmeyer, M. L., & Kelchner, K. (1995). Whose future is it anyway? A student-directed
      transition planning process. Arlington, TX: The Arc National Headquarters.
Whitney-Thomas, J., Shaw, D., Honey, K., & Butterworth, J. (1998). Building a future: A
      study of student participation in person-centered planning. The Journal of the
      Association for Persons with Severe Handicaps, 23, 119-133.

Transition Resources
Students with Disabilities Preparing for Postsecondary Education: Know Your Rights
        and Responsibilities (booklet). Available from the U.S. Dept. of Education, Office
        for Civil Rights.
        To order copies, write:
        ED Pubs
        Education Publications Center
        U.S. Dept. of Education
        P.O. Box 1398
        Jessup, MD 20794-1398
        or fax: 301-470-1244
        or email:
        or call: 1-877-433-7827; TDD or TTY 1-800-437-0833
        or go online
        or go to the website:
        You can also get it in alternative formats from 202-260-9895.
Help for College Students with Disabilities from
Lots of links:
Coulter Video (phone: 336-794-0298;
Several articles, including:
• First Year at College: Lessons Learned
• ASDs and Choosing College Courses
• Helping Students with AS Prepare for the Workplace
Also available from Coulter Video at:
Asperger Syndrome: Transition to Work
This program lists essential preparation for students with AS to find and hold a job. For
        high school age and above.

                                      DRAFT April 2008

Asperger Syndrome: Transition to College and Work
        This program includes two sections: How to get ready for college and how to
        prepare to go from high school or college to the workplace. (Note: this video
        includes all the information in the ―Transition to Work‖ video and also includes
        college prep information.) For high school age and above.
College Prep Portfolio
The right tool to help high school students identify, collect and organize the documents
        required in the college application process – and those that highlight their
        accomplishments to give them an edge in applying to the college of their choice.
        For high school students.
Article: This is for Universities – ―Good Practice Guidelines for Universities‖:
Article: Preparing for College: Tips for Students with HFA/Asperger‘s Syndrome:
Article: Understanding College Students with Autism:
Resource: The Workforce Recruitment Program for College Students with Disabilities:
Chamberlain, C. E., & Strode, R. M. (1999). The source for Down syndrome, East
        Moline, IL: LinguiSystems.
Self-Employment and Social Security Work Incentives for Persons with Disabilities
(Consulting and Training on Employment and Transition to Work):

NOTE: Please be advised that this is not a comprehensive list of Internet resources. It is
provided as a general guideline as to the types of Internet resources available.
Autism Organizations
Asperger Syndrome Coalition of the US:
Autism National Committee:
Autism Network International
Autism Society of America:
Autism Society of Kentucky:
Autism Speaks:

                                     DRAFT April 2008

Bethesda Lutheran Homes and Services, Inc.:
Collaborative on Health and the Environment:
Environmental Factors – Cure Autism Now:
FEAT (Families for Early Autism Treatment):
Friendship Ministries:
Jewish Council for Disabilities:
Human Genome Project Information:,
More Advanced Individuals with Autism, Asperger:
National Apostolate for Inclusion Ministry:
National Council of Churches Committee on Disabilities:
Neuro Immune Dysfunction Syndromes
OASIS - Online Asperger Syndrome Information and Suppor:t

Autism Research
Autism Research Institute:
Autism Society of America:
CAN (Cure Autism Now):
Center for the Study of Autism:
Autism Speaks:

Bookstores /Videos
Autism Asperger Publishing Company:
Autism Related Books:
Autism Society of America Bookstore:
Autism Web Bookstore:
Future Horizons:
Jessica Kingsley Publishers:
Michigan ASA:
North Carolina ASA:
Phat Art 4 Autism:
Stanfield Publishing, Specialists in Special Education:

Federal Agencies
Centers for Disease Control and Prevention: Autism Information Center:
Congressional Information:

                                      DRAFT April 2008

National Institute of Health:

Office of Special Education Programs (OSEP):
U.S. Department of Education:
U.S. House of Representatives:
U.S. Senate:
Other Disabilities Organizations
American Association of People with Disabilities:
ARC of Kentucky:
ARC of the United States Home Page:
Attention Deficit Disorder:
Autism Spectrum Disorders (Pervasive Developmental Disorders) by National Institute
       of Mental Health and National Institute of Health:
Council for Exceptional Children – Kentucky:
Disability Solutions:
Easter Seals Northeast Kentucky:
Learning Disabilities Association:
Mental Health NAMI Kentucky:
National Info Center for Children and Youth with Disabilities (NICHCY):
National Institute for People with Disabilities:
National Organization on Disabilities:
National Parent Network on Disabilities:
Kentucky Coalition for the Education of Disabilities:
Kentucky Developmental Disabilities Council:
Kentucky Family and Children First:
Kentucky Speech and Hearing:
Riverbend Down Syndrome Parent Support Group:
Technical Assistance Alliance for Parent Centers – The Alliance:
The Association for Persons with Severe Handicaps (TASH):
Tourette Syndrome:

Special Education
Kentucky Center for Autism and Low Incidence:
Special Education Regional Resource Centers (SERRCs) – there are 16:
      Central Kentucky:
      East Central:
      East Shore:
      Lincoln Way:
      Miami Valley:

                                    DRAFT April 2008

      Mid-Eastern Kentucky:
      North Central:
      Northeast Kentucky:
      Northern Kentucky:

      Northwest Kentucky:
      Southeastern Kentucky:
      Southwestern Kentucky:
      West Central:
      Tin Snips: A special education resource for Autism:

Special Education Law
COPAA (Council of Parent Advocates and Attorneys):
Disability Rights Activist:
IDEA Practices and IDEA News:
National Center for Learning Disabilities:
OLRS (Kentucky Legal Rights Service):
Reed Martin:

State Agencies
Legislative Service Commission:
Mental Health:
Mental Retardation:
Office of the Governor:
Kentucky Association for Person‘s in Supported Employment (Kentucky APSE)
Assistance Line: 419-352-0506 x4065 (no website at this time)
Kentucky Department of Education Office for Exceptional Children:
Kentucky Department of Health:
Kentucky Department of Health – Help Me Grow:
Kentucky Department of MR/DD:
Kentucky Developmental Disabilities Council:
Kentucky General Assembly:
OLRS (Kentucky Legal Rights Service):
Kentucky Legal Rights Service Children with Disabilities:
Kentucky Resource Center for Low Incidence and Severely Handicapped:

                                     DRAFT April 2008

Special Education Regional Resource Centers (SERRCs) – there are 16:
Central Kentucky:
      East Central:
      East Shore:
      Lincoln Way:
      Miami Valley:
      Mid-Eastern Kentucky:

       North Central:
       Northeast Kentucky:
       Northern Kentucky:
       Northwest Kentucky:
       Southeastern Kentucky:
       Southwestern Kentucky:
       West Central:
To verify which SERRC you should use visit:
Vocational Rehabilitation:


                         DRAFT April 2008

          Useful Forms
The following forms may be helpful and can be printed out
for your personal use:
       • Developmental Milestones Form
       • Family Health History
       • Emergency Contact Information Form
       • Parent Record-Keeping Worksheet
       • Child/Student Profile
       • Home-School Communication Form

You may want to keep all of your child‘s records and
official documents in one place. You may want to include:
         • Birth Certificate
         • Social Security Card
         • Medical/Insurance Card
         • Immunization Record
         • Copies of Evaluations and Assessments
         • Multi-Factored Evaluation (MFE)
         • Copies of IFSPs/IEPs (current and previous)
         • Other school records

                                      DRAFT April 2008

                    Developmental Milestones
This is a form to record your child‘s development. It can help you keep track of
developmental delays; therefore, it can serve as a reference when visiting the doctor or
going through the evaluation process.

Date of Birth: _______________ Date Completed: ________________
Weight at Birth: ______________ Length: _______________________

Age when child was able to: (Represents typical age range)
   1. ______ Hold head up (6 weeks)
   2. ______ Smiles (2 months)
   3. ______ Babbles (3-4 months)
   4. ______ Roll over (4 months)
   5. ______ Reaches for object (4-7 months)
   6. ______ Sits without support (6-7 months)
   7. ______ Crawls (6-7 months)
   8. ______ Drink from cup (6-9 months)
   9. ______ Stands alone (11-12 months)
   10. ______ First word mama, dada (12 months)
   11. ______ Walks alone (12-18 months)
   12. ______ Uses two-word phrases (18 months-2 years)
   13. ______ First tooth (6 months-1 year)
   14. ______ Toilet trained (2-3-½ years)

                                      DRAFT April 2008

                         Family Health History
This form allows you to track your family‘s health history and can serve as a reference
when completing paperwork in the future.

Condition                                 Yes No Family                        Age
                                                 Member/Relative               Began

Autism Spectrum Disorders

Attention Deficit Hyperactivity
Disorder (ADHD)

Obsessive Compulsive Disorder

Anxiety Disorder

Bipolar Disorder



Other Psychiatric Disorders:




                                     DRAFT April 2008

                     Emergency Medical Form
This form is intended to provide basic medical information in case of emergency.

                                            DRAFT April 2008

Name                                                 Date of Birth
Blood Type Age        Eye Color    Height          Weight Gender
Address                            City         State     Zip
Home Phone ( )                     Cell Phone ( )
Current Medications
Medication Dosage     Schedule     Reason    Prescribing Physician or
                                             Over The Counter (OTC)
Emergency Contact Information
Emergency Contact Person           Relation
Home Address                       City         State    Zip
Daytime Phone ( )                  Cell Phone ( )
Evening Phone After 5 p.m. ( )     Alternative Phone ( )
Work Address                       City         State    Zip
Primary Physician Information
Name of Primary Physician
Address                            City       State    Zip
Phone ( )                          Emergency Phone ( )
Other Physicians/Specialists
1. Physician/Specialist            Reason
Address                            City       State    Zip
Phone ( )                          Emergency Phone ( )
2. Physician/Specialist            Reason
Address                            City       State    Zip
Phone ( )                          Emergency Phone ( )
Other Information
Disabilities or Other Conditions
Primary Language
Primary Method of Communication
Adaptive Equipment
Special Notes or Considerations
Insurance Information
Insurance Company                  Policy Number
Primary Subscriber Name            Group Number

              Emergency Response Information
               for Individuals with a Disability

                                         DRAFT April 2008

This form may be filled out and provided to the local police or fire and rescue
departments, either in preparation for possible emergencies or to be ready at their
arrival at an emergency.

Name of Person with Disability

Home Address

Date of Birth

Home Phone

Cell Phone

Work Phone

Emergency Contact Name

Relationship to Person with Disability

Home Phone

Cell Phone

Work Phone

Name and telephone of person‘s specialist (doctor or teacher) if emergency contact
cannot be reached

Is the individual able to communicate with speech?

Does the individual understand receptive language (what is being said to him/her)? Yes
/ No If not, describe his/her method of communication

Would the individual be able to communicate his name, address, and telephone number
in a high stress situation?

Does the individual engage in any unusual behaviors that might seem disrespectful or
threatening (e.g., yelling, giggling, standing too close to people)? If so, please describe

In a high-anxiety situation, how would the individual most likely communicate?

                                       DRAFT April 2008

Is the individual prone to respond in an unusual manner to sensory input (sounds, lights,
smells, etc)? Yes / No
Circle what may result: seizure panic flight fight withdrawal other (please describe)

                                        DRAFT April 2008

What might trigger what is circled above (e.g., dog bark, siren, touch)?

Does the individual have any specific fascinations (e.g., tree climbing, water)? If so,
please describe

Is the individual threatened by any physical traits (e.g., whiskers, hats, uniforms)? If so,
please describe

Does the individual have an accurate sense of danger?

Does the individual have any other medical conditions or is he/she taking medication? If
so, please describe

Please describe anything else that would be helpful to emergency personnel (police, fire,
EMT) who may have to respond to your household and interact with the

Adapted from Jackson County Sheriff Department, Jackson, MI.

                                             DRAFT April 2008

                       Parent Record-Keeping Worksheet for
                        Important Phone Calls and Meetings

This form allows you to take and keep clear, concise notes from important meetings, phone calls, and
doctor‘s appointments. It is a good idea to file and keep these notes for future reference.

Date:______________________Subject: _____________________________

Phone Call: Received/Placed _______Phone # Dialed: __________________

Left Message: Yes / No Other Message Dates

Name of Contact Person:





Other Attendees:

Referred to:                            Reason for Referral:

Telephone #:                                             Email:

Notes/Key Points of Conversation:




Results of Conversation/Next Steps:




Other Thoughts/Notes:


                                       DRAFT April 2008

                          Child/Student Profile
This form can be used to give some basic information about your child to a service
provider, relative, babysitter, respite worker, or educational professional. It may be used
as your child transitions from one provider or teacher to another. While its format can
vary according to your needs and preferences, it is helpful to include:
       • child‘s name
       • child‘s disability
       • family dynamics
       • how the child learns best
       • special interests
       • strengths
       • challenges
       • things that upset
       • signs the child is upset
       • calming or soothing techniques
       • motivators and preferences
       • modifications, including curriculum, environmental, organization, and social

The following is one possible way of organizing this information and has been created
for your use. The first page is a sample, completed form, the following page is blank for
your use.

Adapted from Judy Marks, personal communication. Used with permission.

                                       DRAFT April 2008

Name: Johnnie                                      Date of Birth: Feb 20, 2002

This Is Me: I have autism. This means I have trouble understanding you, and letting
you know what I want and how I feel. Sometimes it seems like I don‘t want to play with
you or other kids, but I really do, I just don‘t always know how! I am very active and love
to move all the time. I find it hard to try new things or when my routine changes.

My Family: I live with my mommy. She has to work all day so I go to school. I have lots
of friends that love me and help take care of me at our church. They are kind of like my
family since my grandma and papa live far away.
I also go to a social group 2 days every week; there my friends and I learn to play

My Strengths:                    My Challenges:
• remembering the rules          • understanding what adults ask me or tell me to do
• colors, numbers and letters    • telling you how I feel and what I want
• saying Hi to everyone I meet   • trying something new (food or activity)
                                 • looking at you when I talk to you
                                 • playing with other kids

I Learn Best When ...            My Special Interests:
• I know what you want from      • Blues Clues
• I know what‘s coming next
• Visuals are used

My Motivators and Preferences: Singing, playing in water, Hide and Go Seek
(anything that lets me move and run around), bubbles, tight hugs, French fries and
ketchup, anything else I can dip in ketchup.

Things That                 Signs      How I Calm Down:
Upset Me:                   I’m
                            Upset:     a picture of when I get a break or can go back to
changes in routine          picking    Blues Clues
stopping Blues Clues        at my
sitting still               fingers    go for a walk
waiting                     laying     get a tight hug
                           my head
                           my eyes

Modifications for Me: Visual schedule, visual prompts, timers, lots of praise and
reinforcement, breaks to run around during long sitting or waiting activities.

                               DRAFT April 2008

Date of Birth:

This Is Me Me:
My Family:
My Strengths:                  My Challenges:
I Learn Best:                  My Special Interests:
My Motivators and Preferences:
Things That Upset Me: Signs I’m Upset: How I Calm Down:
Modifications for Me:

                                        DRAFT April 2008

                       Home-School Communication Form
The following is one example of a form, that can serve as a way to pass information from home
to school and back to home. Also included is an issue of Disability Solutions, which offers
several other excellent examples of such forms, as well as information on how to create your

                                          DRAFT April 2008

Date: __________________ Monday Tuesday Wednesday Thursday Friday
At home I ...
_____ Slept all night          _____ Did not sleep well      _____ Had a good morning
_____ Ate all of my breakfast _____ Ate some of my breakfast
_____ Did not eat breakfast _____ Was not feeling well
Other Comments:
Today at school I did ...
_____ Didscrete Trial DTT _ ____ Story Time           _____ Table Tasks
_____ Independent Work         _____ Art Activity     _____ Reading
_____ Sensory Play             _____ Playground       _____ Other
I mastered _______________________________________________________
Today at school I ate ...
_____ Snack _____ Most of my lunch I had some _____________
_____ All my lunch      _____ Very little lunch _____ I used my book
Bathroom routine:       _____ I had no accidents today I had _____ accidents today.
Needed supplies:
Adapted from: Home-School Communication Form from the Autism M.O.D.E.L. Community School, Great
Lakes Center for Autism, 1615 Holland Rd, IRN-134122, Maumee, OH 43537, (419) 897-4400. Used with

         DRAFT April 2008

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